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AJG
21-08-19, 17:55
I have a severe ALS fear and I'm going through tests right now. My story is a bit like this: I' m a 35 year old female with a history of anxiety and I had spinal surgery due to scoliosis at age 13/14. I have rods in my spine. Over the years I had some spasms in my back which have made me stiff while trying to straighten out. These were linked to my periformis muscle. I still have a slight scoliosis so my body is not aligned well. In winter my vitamin d levels were very low at 25. I experienced massive work related stress anxiety for the past 2 years which increased in April. I had massive burn out and was overworking myself and not eating or hydrating well. I started having panic attacks and insomnia

At the end of April 2019 went on anti anxiety medication, brintellix which caused bruises on my legs. Overall I felt good on the medication. I was also taking supplements, LGlutamine, Vitamin b, probiotic, magnesium. By the end of June 2019 I went to the ER due to very bad leg pains. The weekend before I had these symptoms I did a lot of very hard labour around my house and walked for 2 h. Im not very active. Also the week before I drove 8 hours straight with very short stops in between. I did the same trip back 10 hours after 3 days.
Initially I ignored the leg soreness as just lactic acid build up but by thursday night I realized it was not normal. I thought I developed a blood clot. Turned out my CPK muscle enzyme was at 11, 200 so my muscles were breaking down. I was diagnosed with rhabdomyalysis cause unknown. Had to stay in the hospital for 3 days on intense IV fluid flushing. My CPK levels have been consistently down at normal since discharge which is a good sign. Rhabdomyalysis can be caused by intense workout, crush injury, ssri's which i was on but it is also linked to muscular/neurological issues. During this time I also quit my anti-anxiety meds cold turkey as apparently 4 days was enough according to my doctor. I believe I had withdrawals. Brain fog, insomnia, resless leg syndrome, vertigo those stopped.

For about a week and a bit after hospital discharge I was okay then the following happened:

A week after hospital discharge, I decided to go down 23 flights of stairs and carried my friends 18 month old son around a mall. Not the smartest decision after muscle breakdown. The following day my calfs were inflamed. I could barely walk on my left leg. I rushed to the doctor to check my CPK which were normal. My legs were ok and I was able to walk fine.After that week everything went downhill.

Since June 17, I started twitching in my left bicep. The twitches spread to other parts of the body: legs, feet, back, ribs, you name it I had it. The twitches are daily some days worse than others. They are not constant and happen when I'm at rest or when I'm not moving the area. Initially I had these weird sensations in my legs as if I had bugs crawling inside or bubling. That has since ended. I also have cramps in my legs after walking or numbness primarily in the left leg. This also comes and goes. I did have a band like sensation around my head that's gone. I had one tiny tongue twitch. I have gastro issues. Before being on medication I had IBS. I cannot form a normal stool now. I been to a Gasto doctor who said I'm constipated which I don't think that's the case. I started having a a right hand tremor that comes and goes. On July 23 i had a massive facial twitch on my left side. I was crying so much that day and felt my nerves building up inside me when I found out my MRI and nerve study will not happen until November. After I stopped crying the twitch happened. I thought I was having a stroke. I didn't have it again but sometimes still get a bit of a twitch around the crease of my mouth, my eye lids are more shaky when I close them and I had a bit of a twitch to my left eye lid. I had to take predisone steroid for 5 days as my face did droop a bit. I also have tingling in my hands that come and go and burning sensations in my arms. Last week at night I had electrical like sensations running from my elbow to my fingers. I feel tired in general but I'm also in a constant fear and panic that I have this terrible disease. I cry daily. This week alone I been to the Emergency Room twice. I had a CT scan on my brain which showed no abnormalities. The hospital has referred me to see a neurologist. That appointment is on September. I will also be getting a full MRI of my brain and spine. The nerve conduction study is pending. I already had autoimmune tests and muscle related blood work which all came back fine. Im also waiting to complete Lyme disease testing. One of the ER doctors wrote peripheral neuropathy as his diagnosis which scared me even more. He wrote that my leg reflexes are hyper but im symetrical on both sides and I'm still within the 2 to 3 range which I read is normal. When I'm in a hospital or having tests done I'm highly anxious. Even during a leg ultrasound my legs were shaking so much from fear you would think I was having a seizure.
Every doctor that I've seen don't think I have MS or ALS but untill I have tests in my mind is like what do they really know. Honestly I will take MS any day as a diagnosis because at least you can live with it. I am not dropping anything, I'm not falling over, I have no dropped foot nor does it look like doctors are concerned about me having clinical weakness. I can walk on my toes but i'm more shaky when I'm standing on them in one spot. I can stand on one leg on both sides. I have some weakness like I'm not as strong as before but I can still do things. The last Emergency room doctor who ordered my CT scan said that we will do more tests to rule out organic causes and he did mention ALS, MS even though he told me that he also does not think I have it. I started to shake uncontrollably at the hospital at the mention of ALS. He ordered me to take lorazapam every 4 hours. It keeps me calm but I feel like I'm high 24/7. It has stopped the burning in my arms but when I have to drive I dont take it so the burning comes back. Twitching is less on lorazapam but still there. I am going to therapy and I'm doing CBT but I honestly find it useless now.

I am a complete basket case. I had good days but every day now is a struggle. I'm so scared that this is the start to an end.
I am obsessed with body sensations. I keep thinking my muscles are shrinking but my family does not believe so. I am not losing drastic weight just fluctuate between few pounds.

I'm scared that the CPK started because of an underlying disease. I'm scared that the ssri's were just a coincidence and not the cause. I also wanted to think I was going through medication withdrawal but I can no longer believe it would take this long.
I've been reading other peoples experiences on this forum and it does help to an extent but I'm living in hell.

its1111
21-08-19, 23:39
Just wanted to say I have had twitching for 9 months now and understand your ALS/MS fear. I went to a neuro and passed the neuro exam, but waiting on an EMG next month. At this point, I am hoping anxiety is the cause for all of this. I would imagine I would be getting worse by now if it were something more sinister. Are you taking anything for anxiety?

AJG
22-08-19, 01:35
I went back to my doctor today and I will be starting Zoloft. I am currently taking Lorazapam every 4 h which is not a solution. I have my brain mri tomorrow and the spinal one is pending. Very nervous of the outcome. I am in the barganing stage where I would be okay with MS as I know you can still live a productive life. My close friend has MS so I know it is duable.

lofwyr
22-08-19, 04:43
As an aside, ALS and MS fears are very common here. To my knowledge there is a single MS diagnosis out of the hundreds, maybe thousands of posts here about neurological fears. No ALS diagnosis at all. Last I heard the person who had MS was doing fine.

AJG
29-08-19, 14:43
I had my brain MRI and it came back clear. My c-spine MRI is this saturday. My doctor freaked me out again and I started to do well. She prescribed me Clorazapam in between until Zoloft kicks in. The twitches went away but returner mildly after my conversation with her yesterday. I found out that Clorazapam can be used to treat anxiety but it is also prescribed to people with neurological issues to stop spasms, twitches etc. She told me that if I do the nerve study I might need to stop taking it before the test as we won't really know anything until the nerve study. Now I just feel like ok I'm taking this and it's just masking stuff up. I'm back to freaking out.

its1111
29-08-19, 19:39
I totally get your fear...I'm right there with you. BUT if the clonazepam is stopping the twitches, I highly doubt it is anything super serious. I'm not a dr, but I don't think anxiety meds would stop twitching in something like ALS.

AJG
30-08-19, 18:52
The medication deceased the twitches and I felt great until I saw my doctor which increased my anxiety and put me back into the hole of "what is this". So now I'm back to twitches not as much but still there and experiencing right leg numbness and ache in that leg today. Yesterday I was so depressed I stayed in bed all day. I would be so happy if all of this is caused by my anxiety. I think once I go for my nerve study I'm going to cry in that office out of fear.

daytona1
30-08-19, 20:19
Having this fear myself currently. Anyone else fele like their thigh muscles are twitching or quivering very slightly? Also had lots of aching joints etc. Got myself into a real state over this

Fishmanpa
30-08-19, 21:40
I post THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) on all the ALS threads and it's time to post it here.

Positive thoughts

whome
30-08-19, 22:56
These posts brought back so many memories from a very dark time in my life. There are so many ďsymptomsĒ that u have that I also had. Bc of a sudden onset of muscle cramps, weakness, fatigue, localized muscle twitches...I was convinced that I was going to meet a terrible fate with ALS. CONVINCED. So much so that I prayed that in the end the diagnosis would be MS instead of ALS bc it is manageable. I watched my muscles constantly to see the twitches that I felt. Analyzed the size of my muscles (is that a dent or is that muscle smaller than the other bc itís wasting away?) I. Was. CONSUMED by this fear. The closer it got to time for my tests (I had them all done in one day), I could barely eat, sleep, or think straight bc I was so scared. When the technician told me that she saw nothing on the tests besides mild neuropathy, it took a minute to sink in. By the time I made it to the parking lot I broke down and cried. It was like I could finally let go of months of months of the fear. On my follow up appt, my doctor said I had my Myositis or inflammation of the muscles. I still do not know what caused it and thatís just fine with me!!! The funny thing is, after I knew I was fine, I stopped watching, analyzing, fretting and eventually stopped twitching [emoji4] thatís been about 2 1/2 years ago oddly enough, when I get a random twitch here or there now itís when Iím stressed. Please take comfort in what Iím telling u. Trust me, I know it is hard but it IS possible. Get ur test done so u can put this behind u like I did.


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daytona1
31-08-19, 13:39
Thanks for the post Whome, its nice to hear stories of people who have come out the other side and are fine. It's just so draining, one minute im feeling a bit better and more positive then shortly after ill be in a complete state after feeling a new twitch or tingle etc and it starts all the worrying off again. I just dont know what im being hypervigilant to and whats due to my psychological state anymore and its doing my head in. Im walking round doing all these things to test my strength and movement abilities and the moment something seems slightly off it scares the hell out of me. Is it possible to be hypervigilant to your body without actually thinking you are i wonder?
Main things im dealing with are a fizzing/tingling feeling in my legs mostly when sitting or laying down. Twitching going on a fair bit aswell. Ive also seemed to have some excess saliva occasionally but i did briefly see something about that being a symtom of ALS so it could be my mind playing on that. I didnt know if the issue with saliva in ALS was because people cant swallow easily though and thats what im hoping as opposed to the body just making more. I darent look it up. I totally know what you mean about the hoping the diagnosis is MS thing. MS was originally the thing i was worried about in relation to all this but when i started seeing things about ALS it totally freaked me out and now im exactly the same as you, ive told myself i hope it is MS as the alternative in ALS is so much worse. Thats not to be disrespectful to anyone with MS as its clearly a tremendously hard thing to cope with day to day. Its just not ALS.
Im supposed to be going on holiday with family in a couple of weeks and right now im not even looking forward to it half the time. Just sick of the constant backwards and forwards in my mind over the cause of these sensations. Ive been seem by two doctors and had strength and reflex tests etc which were all fine. Ive also had every blood test under the sun. Im being referred for some nerve conduction tests and petrified tbh :(

AJG
31-08-19, 15:34
Thank you for sharing everyone.

I feel like i've had every test under the sun since this started extensive blood work. Ultrasounds, CT scan, Lyme disease testing, autoimmune testing. I passed every test so far. Having an MRI never scared me but the nerve study is what is causing me to completely buckle. Waiting for tests is a nightmare as everything takes so long. We will see what the MRI of my c spine shows if anything. I don't want to have anything but part of me would be even more scared if nothing shows in the MRI at all. I almost want spinal stenosis or a pinched nerve anything. I put this ALS idea in my own head and I wonder why did I go immediately to the worst case scenario. I wish they actually did an MRI of my lumbar spine and pelvis as it is the only part of my spine that is not fused after scoliosis surgery. I have joint pains but I also have been very inactive since June mainly due to the depression and fear of my rhabdomyalysis coming back. Aside from walking I have not done anything else. The self testing is daily for me. I used to take my work over my health and killed myself working. Now I am just hoping I can get through this. My family wants me to get motivated to start living. Having this unknown cloud over my head feels like my life is just on hold.

whome
31-08-19, 15:48
I can completely relate to how you are feeling right now. I am just now coming to terms with the fact that I have health anxiety and I am in a bit of a state with it presently but itís not even close to the hell I went through when I had ALS paranoia.

I read, researched and studied everything I could find on ALS (I canít even begin to tell you what a bad move that was) that being said, something that I do remember reading is that it does not cause an increased production of saliva. It is due to weak muscles used for swallowing and also going off of what I read. that it doesnít cause buzzing, tingling, pain, etc. really. It is about weakness and wasting. You already said you passed your tests for that. Feel a little better?? [emoji4][emoji4]

My twitches started in my right cheek. Kind of like an eye twitch. When I googled muscle twitch in the face, I was flooded with stories of MS and then ALS. After all of the reading and the real paranoia set in, the twitches moved to all over my body. I twitched all over my body all the time! Even though I felt like my arms were weak, I passed my strength tests at the neurology clinic. He told me I had perceived weakness but I did fine in all testing. My reflexes were overactive but he said it could be my normal (I wonder if itís not bc I was in such a heightened state of alert...I felt like I couldíve jumped out of my skin all the time during this time. Anxiety?)

My symptoms were REAL just like I am sure yours are as well. It was just that I took my real symptoms and threw anxiety on top of them and amplified them into a terrible, terminal illness. Google didnít tell me it could be myositis or some other reasonable explanation and to make matters worse I allowed my anxiety to take that misguided scenario that was put in front of me and turn it into my own little dark reality In my own mind.

I know this reply is forever long but I truly feel for you guys going through this!! I wish I could help in some way. I know you are terrified of the test. So was I!! But the only way through it is through it and you will so much better when they tell you that you are fine!!! [emoji4]


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whome
31-08-19, 15:59
AJG, just remember that even if your MRI is clear, donít panic. Mine was perfectly clear as were all of my blood tests for tick borne diseases, vitamin deficiencies, electrolyte deficiencies, you name it. The only abnormal on testing that showed up was mild neuropathy in my hands. Like I said, you will feel so much better when your conduction testing, etc is done and you hear that it is all normal [emoji4] I know there is nothing I can say to make you feel better until then but looking forward to the update posts when you guys are clear of testing and this is behind you. Itís a great feeling!


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AJG
31-08-19, 17:09
It does make me feel better to hear this. I developed this extreme health anxiety years ago but not to this point. It really all started with me going to a random reflexiologist about 7 years ago. This woman freaked the living life out of me and basically said i need to be saved after I told her I have metal in my spine. She went as far as coming after me as I'm leaving the clinic and said to me, do you want a husband, do you want kids go get yourself tested. Your eyes are not even clear. All that metal is affecting your entire system.Never told me what I should be tested for and I did not ask. The rational part of me is like ok this is some woman trying to get more business out of me by making it seem like I'm on my death bed. Also she is not a mind reader. The scared part of me is now what if she was right and now all this is coming true. I think the only comfort I have right now is that I have not failed at anything but the irrational part of me wonders if I will just wake up paralyzed in my bed or fall. As a kid having massive spinal surgery was a walk in the park compared to this. I always expected some minor issues caused years after surgery such as osteoarthritis before I'm 40 but I don't even have that. I've been told common things are common by many doctors. The only real change before all this was me going on antidepressant. I don't even trust doctors it seems until those tests are done.

daytona1
31-08-19, 17:11
Whome the messages really do help and nice to hear that some of the things i was worrying about dont fit with ALS. Fishmanpa also linked a really good article which states that tingling isnt indicative of ALS and thats my main symptom currently.

whome
01-09-19, 04:20
AJG, [emoji50] this woman followed you outside ranting these things at you?? Ugh!! So she planted another fear in your mind. I am sure that with all it sounds like you have been through at such a young age, it mustíve been traumatic. From what I am understanding, health issues can send some of us into a tail spin of anxiety over the future and I am sure that her ranting these things at you didnít help you one bit! Do you feel like if you hadnít had the implants she wouldíve just came up with another issue to call you out on? I wonder if thatís not the case [emoji848]. I am not very familiar with reflexologists (and no offense if there are any reading this) but where did she get the skill to be able to look into your eyes and tell you that you are poisoned and to just ďknowĒ that metal is affecting your system?? That really irks me that she did you that way.


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Seymour
01-09-19, 16:21
For the last four days I’ve been having twitches and burning in my legs when lying down like they’re super sore from exercise but I’ve done nothing. I actually have been mostly in bed or on the couch for the past three months in a state of super high anxiety.

When I walk around my legs are weak to the point of trembling when going down stairs and I’m feeling the weaknesses in my buttocks too. Kind of a feeling of hollowness and weakness in the legs.

They don’t feel numb I can still feel things but they’re in a constant state of soreness and weakness.

Is this a common symptom of MS or ALS? Is it the three months of anxiety, undernutrition and probably dehydration manifesting that way? Kind of a cortisol overdose?

please help folks I’m freaking out that I’ll become paralyzed

I just switched to Zoloft from Celexa so maybe some withdrawal?

I’ve also been dizzy for months with twitches all over, face, back, legs, arms. I got a clear brain MRI so doctor says MS ruled out but I know it’s not true. I asked to see a neurologist but the wait is long.

please help. ☹️

Feeling devastated and scared. No idea what I could have other than MS or ALS.

nomorepanic
01-09-19, 17:02
For the last four days I’ve been having twitches and burning in my legs when lying down like they’re super sore from exercise but I’ve done nothing. I actually have been mostly in bed or on the couch for the past three months in a state of super high anxiety.

When I walk around my legs are weak to the point of trembling when going down stairs and I’m feeling the weaknesses in my buttocks too. Kind of a feeling of hollowness and weakness in the legs.

They don’t feel numb I can still feel things but they’re in a constant state of soreness and weakness.

Is this a common symptom of MS or ALS? Is it the three months of anxiety, undernutrition and probably dehydration manifesting that way? Kind of a cortisol overdose?

please help folks I’m freaking out that I’ll become paralyzed

I just switched to Zoloft from Celexa so maybe some withdrawal?

I’ve also been dizzy for months with twitches all over, face, back, legs, arms. I got a clear brain MRI so doctor says MS ruled out but I know it’s not true. I asked to see a neurologist but the wait is long.

please help. ☹️

Feeling devastated and scared. No idea what I could have other than MS or ALS.

Can you add this to your own post please. Thanks

lofwyr
01-09-19, 17:45
For the last four days I’ve been having twitches and burning in my legs when lying down like they’re super sore from exercise but I’ve done nothing. I actually have been mostly in bed or on the couch for the past three months in a state of super high anxiety.

Feeling devastated and scared. No idea what I could have other than MS or ALS.

You have your answer right there. Not being trite, but 3 months of super high anxiety is like a workout 24/7 for every part of your body from your brain to your toes.

AJG
01-09-19, 18:52
I can relate to the burning minus it's in my arms. This is new for me it mainly happens at night. No burning in legs just the random numbness one leg at a time. Sitting around will also cause a lot of issues. I was affraid to walk thinking I would fall but I'm still standing. I self test daily. Switching medications will cause crazy side effects as well. I've been there. High anxiety makes the symptoms so much worse. At the beginning of my symptoms my legs were crawling with twitches, very heavy. It did get better but not to the stage I would like to be in right now.

daytona1
01-09-19, 22:28
This is what i have AJG, a crawling and twitching sensation in legs. Im now getting what i can only describe as a "weird" feeling in my tongue and thats scaring the life out of me more than the twitches etc right now. Sort of like its swollen but its not when i look at it. Have any of you had thisor something similar?

Seymour
01-09-19, 23:33
I can relate to the burning minus it's in my arms. This is new for me it mainly happens at night. No burning in legs just the random numbness one leg at a time. Sitting around will also cause a lot of issues. I was affraid to walk thinking I would fall but I'm still standing. I self test daily. Switching medications will cause crazy side effects as well. I've been there. High anxiety makes the symptoms so much worse. At the beginning of my symptoms my legs were crawling with twitches, very heavy. It did get better but not to the stage I would like to be in right now.

I just never experienced feelings like this from anxiety.

I’ve been twitching in my legs, back, face, arms, just everywhere.

When I walk for a while my legs almost start to shake. It’s like I can feel the weakness in my legs, groin and buttocks. When it was just the twitches I told myself hey you don’t have weakness but now I do have weakness.

I’ve been in a constant state of extreme anxiety for three months. Eating poorly, forgetting to drink. I’m convinced I have ALS now or progressive MS. What else could this be?

Seymour
01-09-19, 23:43
Sorry I don’t want to hijack your thread I just wanna share.

Fishmanpa
02-09-19, 00:05
Sorry I don’t want to hijack your thread I just wanna share.

Sharing and reassurance seeking are two different things :shades:

For all who have this fear, I suggest you read THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) as many times as you need to.

Positive thoughts

AJG
02-09-19, 00:58
Initially I had the crawling sensation along with the twitches in my legs. I had cramps, spasms you name it. I experienced one tongue twitch and prickly sensations. Those are gone now. My face is not back to normal. I had a massive left side facial twitch once. I still have a bit of a tremor in the area when I smile. It is very scary. I completely understand the fear. For me I am petrified as I had unexplained muscle enzyme breakdown which of course after reading google can be linked to muscular dystrophy but also to the ssris that I started taking. I had jelly legs initially. It was hard to walk and energy was very low. Few weeks ago I wore wedge shoes and the back of my legs felt very weak. I had to go home. Then there are days I feel like I need to push through and I'm okay. I seek reassurance daily from people around me but I know that at the end I'll need to go and do all these test to get answers no matter what it is. I wonder is anyone experiencing any burning sensations? It almost feels like a sunburn. I stay away from reading about ALS because I know I will not be able to function if I do. At the beginning I watched some videos and read some stuff online. I can't do that to myself anymore.

Seymour
02-09-19, 03:01
I experience the sunburn feeling in my legs.

Hijikata
02-09-19, 03:56
Lol you are all saying you are experiencing sensory sensations which do not happen in ALS. No numbness, no tingling, no “sunburn” feeling, pain and cramps come very late in the disease. It’s not an “oh I feel weak”, it’s a, “why can’t I lift my arm above my head”. I only share this because I have also been consumed with this fear and have been to two neurologists who did the reflex checks, the strength tests and the body examinations and who have both said that it looks like I have no problem. The second gave me a referral to a University Hospital for an EMG but said he didn’t recommend it, only if I couldn’t stop my worrying. He also said that the first thing most people will notice is the muscle wasting of their hand, and especially thumb muscles, which then leads to the weakness of that hand. Both I told about my twitches and both didn’t really seem to care about them all that much. The strength tests seem to be the most important, especially the hand grip tests and tests against resistance. What you are all expressing are classic anxiety symptoms made worse by hypersensitivity and laser sharp focus on the symptoms - something I am all to familiar with myself.

My doxtor also also said you have to remember that als is an incredibly rare disease. For instance, Tokyo university medical hospital, one of the biggest in japan, only saw 160 als patients last year (in a country of 120 million people - including a lot of old people) and more importantly o it administered about 200 emg tests for the whole year. Just think about how minimal those numbers are in a country with such a large population. Easier said than done but you just gotta take a step back and try to chill out and not focus on the symptoms because I can guarantee you that you are making them worse

tryingtosurvive1
02-09-19, 08:21
Hey, at the risk of totally freaking you out . . . I have something called Charcot Marie Tooth, it is a familial periphereal neuropathy that progresses SLOWLY across a NORMAL lifetime. You wouldn't happen to have high arches or weak ankles, or a parent with same? It can come with scoliosis. In my case the sensory issues came on kind of strong, but I now take gabapentin for it and can cope okay.

However this is rare; I wonder if you are having biomechanical issues from scoliosis itself--like a pinched nerve. It can be no joke as I'm sure you know. Have you posted on any boards about that?

I think it might be possible that what you are experiencing is due to more than anxiety but is not ALS. Other posters are also right that ALS is not sensory.

Your EMG/NCV will probably tell whether you have something going on or this is all just anxiety. If scoliosis is causing some issue (like pinched nerves) I think the EMG/NCV will show that too. Occam's razor says this is somehow connected to your existing bodily issues, not ALS/MS. (Also even if there is a non-anxiety component, some of the symptoms may be anxiety only. You list a lot.)

tryingtosurvive1
02-09-19, 08:23
Benign Fasciculation Syndrome for you. (I only suggest that the other poster could have a non-anxiety related issue bc of the scoliosis.)

Ow1984
02-09-19, 12:37
Lol you are all saying you are experiencing sensory sensations which do not happen in ALS. No numbness, no tingling, no ďsunburnĒ feeling, pain and cramps come very late in the disease. Itís not an ďoh I feel weakĒ, itís a, ďwhy canít I lift my arm above my headĒ. I only share this because I have also been consumed with this fear and have been to two neurologists who did the reflex checks, the strength tests and the body examinations and who have both said that it looks like I have no problem. The second gave me a referral to a University Hospital for an EMG but said he didnít recommend it, only if I couldnít stop my worrying. He also said that the first thing most people will notice is the muscle wasting of their hand, and especially thumb muscles, which then leads to the weakness of that hand. Both I told about my twitches and both didnít really seem to care about them all that much. The strength tests seem to be the most important, especially the hand grip tests and tests against resistance. What you are all expressing are classic anxiety symptoms made worse by hypersensitivity and laser sharp focus on the symptoms - something I am all to familiar with myself.

My doxtor also also said you have to remember that als is an incredibly rare disease. For instance, Tokyo university medical hospital, one of the biggest in japan, only saw 160 als patients last year (in a country of 120 million people - including a lot of old people) and more importantly o it administered about 200 emg tests for the whole year. Just think about how minimal those numbers are in a country with such a large population. Easier said than done but you just gotta take a step back and try to chill out and not focus on the symptoms because I can guarantee you that you are making them worse

I have noticed that my Left thumb muscle is smaller than my right, I'm now worried I have muscle atrophy in my left hand this is also the finger and thumb where my twitching has been.

BlueIris
02-09-19, 12:49
Bodies aren't symmetrical, though. As has been pointed out, ALS is vanishingly rare.

Fishmanpa
02-09-19, 13:25
For all who have this fear, I suggest you read THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) as many times as you need to.

From that article...

ALS is about failing, not feeling.

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work

Everyone here are using the words "feels like".... "It feels weaker"... etc.... Read the above. That alone rules it out. Carry on if you wish but none of you have ALS.

Positive thoughts

Ow1984
02-09-19, 14:24
From that article...

ALS is about failing, not feeling.

ALS is about failureófalling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossibleÖ no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you canít lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work

Everyone here are using the words "feels like".... "It feels weaker"... etc.... Read the above. That alone rules it out. Carry on if you wish but none of you have ALS.

Positive thoughts

But having read lots of posts here now it says that atrophy is also a 1st sign. My left hand thumb is certainly smaller than my right. Does anyone know what does atrophy feel like? I know that hands are asymmetrical
, how quick does atrophy take before weakness is noticed?

Fishmanpa
02-09-19, 14:27
But having read lots of posts here now it says that atrophy is also a 1st sign. My left hand thumb is certainly smaller than my right. Does anyone know what does atrophy feel like? I know that hands are asymmetrical
, how quick does atrophy take before weakness is noticed?

"But".... The dragon's favorite word! :lac: And it's apparent you haven't really comprehended the words in the link I posted.

Positive thoughts

Seymour
02-09-19, 14:48
I have actual weakness. My legs tremble and twitch when I walk any longer than a few minutes.

nomorepanic
02-09-19, 14:55
I have actual weakness. My legs tremble and twitch when I walk any longer than a few minutes.
Isn't that because you didn't move much for 3 months?

lofwyr
02-09-19, 15:20
But having read lots of posts here now it says that atrophy is also a 1st sign. My left hand thumb is certainly smaller than my right. Does anyone know what does atrophy feel like? I know that hands are asymmetrical
, how quick does atrophy take before weakness is noticed?

Atrophy isn't having one part smaller than another. It is not being able to pick up a pencil because your thumb is so wasted and weak.

Also, are you left or right handed? I am right handed and my left thumb is WAY bigger than my right. There's no sense to that, it's just how we are. You have no symmetry, symmetry is a myth. One kidney is probably bigger than the other, one eye too etc etc.

AJG
02-09-19, 15:24
Dominant hand will look stronger and more muscular than the non dominant one. My own doctor also told me this which makes sense.
As to some prior comments I am starting to wonder about a pinched nerve or something along those lines. I have no family history of any muscular neurological disorders. I was the lucky and first one in my family to get scoliosis. Unfortunatelly there is so little information out there about what happens in adulthhood after surgery at least with the newer metal that they used during my generation. There is a lot of information about Harrington rod issues which they don't use anymore to my understanding and it was not used on me. My xray of my back came back unremarkable aside from slight rotary scoliosus. This was no news to me as surgery never corrects it 100%. However, the MRI hopefuly will shed some light.
My twitches now are primarily in my ankles and feet, occasional bicep, butt, calves. Im kind of at the point whatever it is bring it on as I'm so exhausted of not knowing

Seymour
02-09-19, 15:24
Is it common in ALS to have twitches almost in every part of the body?

nomorepanic
02-09-19, 15:33
You ignored my question.

Seymour
02-09-19, 15:35
You ignored my question.

I don’t think it could explain symptoms as persistent and severe.

It coincides with upping my dosage of Zoloft but I don’t think Zoloft can cause muscle pain and weakness.

lofwyr
02-09-19, 15:39
When I am anxious, I twitch all over, head to toe, all the time. Never even thought anything of it.

Fishmanpa
02-09-19, 15:43
Is it common in ALS to have twitches almost in every part of the body?


Can you add this to your own post please. Thanks

I agree.... you've hijacked the thread and made this about you for more reassurance that won't solve the issue which is severe anxiety that needs real life professional help.

Positive thoughts

Seymour
02-09-19, 15:47
I’m sorry I did that.

AJG
02-09-19, 16:57
Zoloft can cause muscle twitches as well. I understand the anxiety. I'm on Zoloft but I know that is not what started my twitches. I'm too new on this medication. Seymour did you have any other injuries or things that could brought this on?

elitejcx
02-09-19, 22:16
I havenít stopped twitching since taking sertraline (Zoloft). Itís mostly in my legs and can sometimes jump up to my lower back. I had epilepsy years ago so naturally I asked my GP about it and she said that itís a very common side effect. My GP has experience in psychiatry and she said that itís part and parcel with SSRIs.

Seymour
02-09-19, 22:18
But does it come with leg weakness?

Seymour
03-09-19, 00:22
I’m pretty much 100% sure I have MS or transverse myelitis. I have all the symptoms. Life sucks.

BlueIris
03-09-19, 06:59
Seymour, has it ever occurred to you that your life might suck less if you got on with living it rather than spending the vast majority of it brooding about your bodily sensations?

Ow1984
03-09-19, 13:14
!1 last question which isn't really touched on in the previous messages. Is the twitching constant & also is it whilst at rest or when the muscle is engaged? I have rea different info on this across the internet.

lofwyr
03-09-19, 13:20
I have rea different info on this across the internet.

You have simply *got* to steer clear of googling your issues. Trust me, no one ever improved their anxiety with google.

Ow1984
03-09-19, 13:23
You have simply *got* to steer clear of googling your issues. Trust me, no one ever improved their anxiety with google.

I have the Doctors Friday morning but my worry is very heightened at the moment. I'm unable to stop looking at the symptoms.

BlueIris
03-09-19, 13:28
Go for a walk, then. Don't take your phone.

Ow1984
03-09-19, 13:30
Go for a walk, then. Don't take your phone.

Stuck in work with my laptop. Does anyone know the answer regarding whether ALS twitching is constant or not?

Fishmanpa
03-09-19, 13:48
Does anyone know the answer regarding whether ALS twitching is constant or not?

The answer is HERE! (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) Read it as many times as you need to.

Positive thoughts

lofwyr
03-09-19, 14:42
Stuck in work with my laptop. Does anyone know the answer regarding whether ALS twitching is constant or not?

Then for the love of all things holy, work, and close your browsers. A state of near panic probably isn't productive anyway.

nomorepanic
03-09-19, 14:53
Ask your doctor when you see them about treating the anxiety as well.

Ow1984
03-09-19, 21:21
Ask your doctor when you see them about treating the anxiety as well.

Im going to speak to him regarding the twitching and also regarding my anxiety. Praying both are related, am at my wits end to be honest. But my anxiety started cos of my twitching.

lofwyr
03-09-19, 23:00
Im going to speak to him regarding the twitching and also regarding my anxiety. Praying both are related, am at my wits end to be honest. But my anxiety started cos of my twitching.
There are literally hundreds, maybe thousands of posts like this on this forum and to the best of my knowledge not one, single case of ALS.

I twitch all the time, even when not feeling consciously anxious. The thing is, even though you may not feel it, you are likely an anxious person. I always run a little more high strung than those around me, even when I feel great. It is honestly part of who we are as people coping with anxiety. Just because you weren't aware of your anxiety on a conscious level does not mean it wasn't there.

AJG
03-09-19, 23:17
One reassurance I received today was from my friend who has a family member who is a neurologist. I am waiting to see him. He actually said to her I really hope she does not think she has ALS and laughed at the thought of it. I do find some comfort that a neurologist actually thinks I'm a little insane. However, I am seeing my family doctor tomorrow as my c spine mri result is in. The secretary was nice enough to tell me there are some changes but they are not neurological. They will still send the results to my neurologist as well. She said the doctor can meet with me to discuss if I like so of course I booked the appointment for tomorrow. Part of me is freaking out but the other part of me is like of course my spine is causing some issues and if it was something terrible they would be directing me to the hospital perhaps. I have to justify this crazy ride somehow. I just hope it is something that can be managed. Now I'm like is it my disc, spinal stenosis, a tumour. I figured if it was a tumour it would show in my blood work. Of course I'm in the what if stage. The waiting game sucks.

lofwyr
03-09-19, 23:28
About 1 in 50,000 people will develop it. About 1 in 25,000 people a year develop an aortic aneurysm, and I know NO one in my life besides me who has one. There are half as many people as me diagnosed with ALS. That is a staggeringly small number of people. I have never even met someone who has ALS or who has a friend or acquaintance with ALS.

I mean, it does suck if you are one of the few that do get it, but I often laugh at the hubris of anxiety to make us think we are the unlucky ones who's number is up. So far NO one on this forum has been right, and I expect this trend will continue.

AJG
05-09-19, 00:54
So my cspine mri showed some mild bulging discs but my doctor said it would not cause the symptoms I'm having. My only issues is that the rest of my spine has not been checked. In the past few days the middle of my back hurts when I sit or drive. I have my neurologist appointment on monday. I'm hoping to convince him to do further tests. This is the most exhausting process ever. I'm back in the ALS hole since I know for sure now I don't have MS. My left hand thumb feels achy. Under my thighs feels achy. I know with ALS you are not supposed to feel achy unless your not mobile but I wish they just scanned me for once and for all to put my mind at rest.

Hijikata
05-09-19, 01:21
The neurologist appointment should put your mind at rest. I’ve had three and they all checked my reflexes, strength and scanned for atrophy and they all said that I don’t have a problem (despite the fact that I have stiffness and cramps in my right hand and what I thought was atrophy but was just my normal body shape/type + ridiculous twitches all over). You would have atrophy before weakness because that’s what causes the weakness - so unless there is a significant difference in size between left and right muscles I wouldn’t stress at all. In all my checking pretty sure my right thumb muscle is smaller than my left despite my right being my dominant hand, but I also realised that my left hand is actually bigger than my right and I had never noticed. Moral of the story is go to your neurologist but don’t push for tests that you don’t need, let them decide.

Ow1984
05-09-19, 10:43
The neurologist appointment should put your mind at rest. Iíve had three and they all checked my reflexes, strength and scanned for atrophy and they all said that I donít have a problem (despite the fact that I have stiffness and cramps in my right hand and what I thought was atrophy but was just my normal body shape/type + ridiculous twitches all over). You would have atrophy before weakness because thatís what causes the weakness - so unless there is a significant difference in size between left and right muscles I wouldnít stress at all. In all my checking pretty sure my right thumb muscle is smaller than my left despite my right being my dominant hand, but I also realised that my left hand is actually bigger than my right and I had never noticed. Moral of the story is go to your neurologist but donít push for tests that you donít need, let them decide.

Now I'm confused.I thought weakness was things actually stopped working. Therefore as you are not using that muscle it causes atrophy? Can someone clarify this please.

Thanks

Fishmanpa
05-09-19, 13:02
Now I'm confused.I thought weakness was things actually stopped working. Therefore as you are not using that muscle it causes atrophy? Can someone clarify this please.

Thanks

That is correct. Atrophy is muscle wasting/the loss of muscle mass. Everyone gets this. If you're sedentary, you'll lose muscle mass etc. If it's happening due to disease, then it's pathological. Again, please read THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) as many times as you need to.

Positive thoughts

Ow1984
06-09-19, 10:24
Ask your doctor when you see them about treating the anxiety as well.

So had my appointment this morning. He done very basic strength test said I was strong with grip. Ordered blood tests I spoke about my anxieties and irrational behaviours ( self Testing strength continuously, google ETC) and he basically didn't agree that I needed to speak to someone. I don't feel like Ive had any progress or closure today on anything

whome
06-09-19, 13:31
So had my appointment this morning. He done very basic strength test said I was strong with grip. Ordered blood tests I spoke about my anxieties and irrational behaviours ( self Testing strength continuously, google ETC) and he basically didn't agree that I needed to speak to someone. I don't feel like Ive had any progress or closure today on anything

I am so glad to hear that your strength tests were good. That must be very reassuring [emoji4] I hope you find the help you need with anxiety. Keep after them about getting seen for it.


Sent from my iPhone using Tapatalk

Seymour
07-09-19, 16:31
The answer is HERE! (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) Read it as many times as you need to.

Positive thoughts

I donít wanna be that guy but this post you keep referring to is a bit too black and white. From what Iíve read many ALS patients experience progressive loss of weakness and not a sudden one. Although itís true that in most cases there is a history of tripping or falling or dropping things.

Lou Gehrig for example felt more and more tired and weak and it took some time until he actually couldnít physically do things. I know your post is meant to reassure but the information seems a bit too clear cut.

Fishmanpa
07-09-19, 16:43
I don’t wanna be that guy but this post you keep referring to is a bit too black and white. From what I’ve read many ALS patients experience progressive loss of weakness and not a sudden one. Although it’s true that in most cases there is a history of tripping or falling or dropping things.

Lou Gehrig for example felt more and more tired and weak and it took some time until he actually couldn’t physically do things. I know your post is meant to reassure but the information seems a bit too clear cut.

It is that clear cut. That was written by ALS patients and doctors from their experience and taken from the ALS forum and that's the post that they refer the numerous HA sufferers to when they post on the forum. These are people who are living with it. Your dragon will always find something to keep you captive until you decide to treat your anxiety.

Positive thoughts

Seymour
07-09-19, 17:35
I don’t know if I’m alone in this but I freaked out yesterday and did all kinds of test.

- Walking on ball of foot and walking on heels
- Jumping around on one leg
- Standing on one leg normally and then one leg on ball of foot
- Getting up from chair with only one leg
- Jumping up stairs two feet at the same time
- Jogging in appartement

I passed all tests but my legs really struggled and started twitching a lot after.

I feel like I used to be able to do this easier but could I do this with early stage ALS?

AJG
07-09-19, 19:52
I don't think you would be able to do any of these things if it was ALS. Trust me I'm in the same hole as you. I keep thinking my muscles are shrinking, I'm weaker but what I know 100% is that my mind is not okay. I'm severely depressed and anxious and this ALS thing has consumed my brain and body. It all started for me with my muscle enzyme test showing I had breakdown. This can be linked to anything from exercising to much, medications, muscle or nerve disorders including ALS. Even though I started taking an antidepressant around the time this happened I still cannot accept that this is more of the probable cause than me having ALS. However after I read about all the terrible things imaginable online my symptoms just spiralled. My twitching is way better than what it was at the beginning but of course now I'm looking for stuff on my body and obsessing. I feel like as if I have body image issues now. Like I want to be fatter, I try to see if I'm loosing weight, I measure my legs and arms. This is not normal and I'm well aware. I'm already waiting to see a psychiatrist.

Seymour
07-09-19, 21:09
I don't think you would be able to do any of these things if it was ALS. Trust me I'm in the same hole as you. I keep thinking my muscles are shrinking, I'm weaker but what I know 100% is that my mind is not okay. I'm severely depressed and anxious and this ALS thing has consumed my brain and body. It all started for me with my muscle enzyme test showing I had breakdown. This can be linked to anything from exercising to much, medications, muscle or nerve disorders including ALS. Even though I started taking an antidepressant around the time this happened I still cannot accept that this is more of the probable cause than me having ALS. However after I read about all the terrible things imaginable online my symptoms just spiralled. My twitching is way better than what it was at the beginning but of course now I'm looking for stuff on my body and obsessing. I feel like as if I have body image issues now. Like I want to be fatter, I try to see if I'm loosing weight, I measure my legs and arms. This is not normal and I'm well aware. I'm already waiting to see a psychiatrist.

Can you do these exercices?

AJG
07-09-19, 21:44
I can do those tests

Midnight-mouse
07-09-19, 22:01
Can you do these exercices?

I definitely canít!


Sent from my iPhone using Tapatalk

BlueIris
07-09-19, 22:01
The pair of you really shouldn't be enabling one another like this.

Seymour
07-09-19, 23:49
I’ve been experiencing something very worrying and would like you guys’ sincere input please.

For ŗ few days now especially today I experience shaking when using muscles. When I do a squat or even bend the knees to sit down my thighs start shaking! I also did a few pushups and my right arm was shaking after when I sat on the couch.

This is definitely weakness but is it ALS-type clinical weakness? Do the muscles in ALS start getting weak like that as they slowly waste away or am I just super out of shape from laying down for months and not eating properly?

nomorepanic
08-09-19, 00:03
Come on you know the answer here and how many times do we have to say it - you do not have ALS

Fishmanpa
08-09-19, 00:05
I’ve been experiencing something very worrying and would like you guys’ sincere input please.

For ŗ few days now especially today I experience shaking when using muscles. When I do a squat or even bend the knees to sit down my thighs start shaking! I also did a few pushups and my right arm was shaking after when I sat on the couch.

This is definitely weakness but is it ALS-type clinical weakness? Do the muscles in ALS start getting weak like that as they slowly waste away or am I just super out of shape from laying down for months and not eating properly?

Why not post this on your own thread? All you're doing is seeking reassurance on multiple threads! :lac:

Positive thoughts and dragon food...

Seymour
08-09-19, 00:18
Come on you know the answer here and how many times do we have to say it - you do not have ALS

Just looking for an honest opinion. This does not seem normal and people on ALS forums say they sometimes had symptoms for years before diagnosis...

Fishmanpa
08-09-19, 00:29
Just looking for an honest opinion. This does not seem normal and people on ALS forums say they sometimes had symptoms for years before diagnosis...

Honest opinion? Please stay off the ALS forums. It's disrespectful. Those are people actually suffering from the illness and you truly don't belong there. And you don't have ALS.

Answer me this... Why are you posting on an anxiety forum is you're so convinced you have ALS? :huh:

Positive thoughts

Hijikata
08-09-19, 00:52
Honestly this has become one of the most ridiculous threads on a site full of ridiculous threads. You are both being ridiculous. I agree with FMP you should not be on the ALS forums, not only is it very disrespectful to people whose suffering is not “imagined”, it is not going to help you...at all. I am speaking from someone who still isn’t 100% out of the hole, y’all need to take a step back from yourself, seek some professional help, and not subject yourself to ridiculous daily strength tests

Seymour
08-09-19, 01:18
I know it seems ridiculous. I thought I was not that bad but after doing all the tests and squatting and pushups I now have shaking muscles. I know I wouldn’t have been that shaky three months ago.

I know my muscles are losing strength and trying to compensate. I can’t be sure it’s ALS but I do find it harder to walk.

sorry just super anxious and trying to share

pulisa
08-09-19, 08:34
Trying to share what?

utrocket09
08-09-19, 10:41
I know it seems ridiculous. I thought I was not that bad but after doing all the tests and squatting and pushups I now have shaking muscles. I know I wouldnít have been that shaky three months ago.

I know my muscles are losing strength and trying to compensate. I canít be sure itís ALS but I do find it harder to walk.

sorry just super anxious and trying to share

Hate to break it to you, but many peoples muscle do this after working them. It is called using them.

Hijikata
08-09-19, 11:43
Lol perfect response. I thought it might be obvious but perhaps the reason the muscles are feeling overused is the fact that you are subjecting them to daily strength tests that you weren’t before?

Seymour
08-09-19, 13:57
It doesn’t help but they feel shaky either way. Just stretching them in the morning makes them shake. Maybe that’s how ALS weakness starts. Muscles start to progressively lose their strength until it’s gone.

Fishmanpa
08-09-19, 14:12
It doesnít help but they feel shaky either way. Just stretching them in the morning makes them shake. Maybe thatís how ALS weakness starts. Muscles start to progressively lose their strength until itís gone.

Clinical WeaknessóALS is about failing, not feeling.

ALS is about failureófalling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossibleÖ no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you canít lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work

Positive thoughts

Seymour
08-09-19, 15:16
Again, not that clear cut when you talk to actual ALS patients. And it’s never been clear what happens when your calf muscle for example stops working. Doesn’t that put strain on the remaining healthy tissue that would cause muscle pain and weakness? I know it’s not about feeling but when your muscles hurt from doing almost nothing I call that failing.

BlueIris
08-09-19, 15:27
ALS patients shouldn't be having to deal with your nonsense. Get up, go for a walk and stop indulging these morbid little fantasies.

I'm sorry to be harsh, but anxiety thrives on this sort of slightly embarrassing brooding.

Fishmanpa
08-09-19, 15:29
Again, not that clear cut when you talk to actual ALS patients. And it’s never been clear what happens when your calf muscle for example stops working. Doesn’t that put strain on the remaining healthy tissue that would cause muscle pain and weakness? I know it’s not about feeling but when your muscles hurt from doing almost nothing I call that failing.

You've talked to ALS patients? You're posting on ALS forums? That's just messed up :mad: So since you know better, Ok then... You have ALS :wacko: Hope you have your affairs in order!

Positive thoughts

Seymour
08-09-19, 15:46
I just meant that I read stuff. Not necessary to be harsh like that.

Fishmanpa
08-09-19, 16:00
I just meant that I read stuff. Not necessary to be harsh like that.

Not necessary to take over a thread with your irrationality. Not necessary to say you've talked to ALS patients when you haven't to bolster your irrationality.

If you so strongly believe you have ALS and nothing said can reassure you, why are you on an anxiety forum?

Concerning being harsh? I call it being real. You're effectively trying to convince yourself and others the sky is green. It's time to get real life help and put this to bed as opposed to staying in bed for 3+ months with severe anxiety.

Positive thoughts

utrocket09
08-09-19, 17:12
I just meant that I read stuff. Not necessary to be harsh like that.

No someone needs to be harsh with you because you donít get it. If you actually had ALS, then why the hell are you posting on an anxiety forum?

And why are you wasting time reading an ALS forum? The people there are actually ill....you are not.

You need a hard dose of reality and truth. So here it goes. You are not ill. You are doing tests on yourself that you donít even know what you are looking for. Your muscles shake just as everyone else does which is from probably overuse.

You are really being so irrational it is not even funny. You are not sick physically, you are sick mentally and need help, a help that none of us here can do for you.

Seymour
08-09-19, 17:30
I just had a walk carrying grocery bags and my legs were wobbly and sore.

This never used to be like that

lofwyr
08-09-19, 17:32
ALS fears from anxiety symptoms happen so frequently, I really am starting to this it should have its own forum. Which is sad, when you consider how very rare ALS actually is.

lofwyr
08-09-19, 17:37
I just had a walk carrying grocery bags and my legs were wobbly and sore.

This never used to be like that

To show you the power of anxiety. The other day I found out about basal cell in my nose. It needs to come out. There is about a .05 percent chance of it metastasizing. That's it. It is so rare with basal cell, it is almost a non issue, and most of the people it happens in are the very old folks.

But I read some stuff, scared the hell out of myself, now my nose hurts, I have a headache, and an irrational part of me wonders if it is in my skull and maybe my brain. Those symptoms are real, and 48 hours ago, they were not there. The thing is, I know it is anxiety.

You have GOT to address the anxiety, or the "ALS" symptoms are going nowhere. You will live like this indefinitely, until you move on to another fear or anxiety.

utrocket09
08-09-19, 17:38
I just had a walk carrying grocery bags and my legs were wobbly and sore.

This never used to be like that

Well if you are doing a bunch of self testing over a period of days of course they are going to be sore, and depending the amount of groceries you are carrying, of course your legs will be sore. You are being ridiculous plain and simple.

Fishmanpa
08-09-19, 17:56
ALS fears from anxiety symptoms happen so frequently, I really am starting to this it should have its own forum. Which is sad, when you consider how very rare ALS actually is.

There's a rabies sub-forum so why not an ALS/MS sub-forum?



I just had a walk carrying grocery bags and my legs were wobbly and sore.

This never used to be like that

You also never spent 3 months basically lying in bed or parked on the sofa either :whistles:

Positive thoughts

Seymour
08-09-19, 18:03
It’s not just soreness they’re wobbly, feel almost numb and they twitch like hell. I know you all think I’m crazy. My girlfriend is about to leave me over this, my mother is crying daily, my friends don’t know what to say.

Sad truth is I’ve been twitching for months and my legs are slowly giving out and these are ALS symptoms. If I don’t have clinical weakness I’m sure heading that way. I’ve never seen anybody with these symptoms.

My gf is pregnant and I’m probably facing disability and death so how can I just move on when the symptoms are there daily?

BlueIris
08-09-19, 18:06
Your legs are giving out because you've taken to your bed.

These aren't symptoms, they're sensations, bodies are meant to feel stuff. You're taking a molehill and turning it into the whole Himalayas, and if you can't seek help for the real problem here, it might be better for your girlfriend to be able to focus on herself and the baby for a while.

Seymour
08-09-19, 18:07
I walked maybe 1km with the bags.

utrocket09
08-09-19, 18:09
Itís not just soreness theyíre wobbly, feel almost numb and they twitch like hell. I know you all think Iím crazy. My girlfriend is about to leave me over this, my mother is crying daily, my friends donít know what to say.

Sad truth is Iíve been twitching for months and my legs are slowly giving out and these are ALS symptoms. If I donít have clinical weakness Iím sure heading that way. Iíve never seen anybody with these symptoms.

My gf is pregnant and Iím probably facing disability and death so how can I just move on when the symptoms are there daily?

If I was your girlfriend I would honestly leave you as well. I feel so bad for your girlfriend and child. Someone so selfish, putting themselves before their child. You are neither disabled or facing death.

What you are is someone whom is mentally sick.

Seymour
08-09-19, 18:09
I know I need help for the anxiety but muscles should get better with rest and now I’m nearing two weeks of these weak sore legs. And add to that the twitches and it’s just making me crazy.

BlueIris
08-09-19, 18:12
Trust me, anxiety breaks all the rules when it comes to logic. I've felt weak and shaky most of today and I'm not worried in the least, because I know stress makes even the most basic tasks feel insurmountable.

Fishmanpa
08-09-19, 18:13
My gf is pregnant

Ahhhh... the trigger :shades:

Positive thoughts

Seymour
08-09-19, 18:13
If I was your girlfriend I would honestly leave you as well. I feel so bad for your girlfriend and child. Someone so selfish, putting themselves before their child. You are neither disabled or facing death.

What you are is someone whom is mentally sick.

I am not at all putting myself before my child. I’m super sad that my girlfriend can’t have the happiness she deserves during her pregnancy. It’s killing me. I’ve been feeling physically ill and having ALS symptoms and nobody believes me and I just don’t know what to do. I love my gf and would never do anything to hurt her. You’re right that I’m sick.

Seymour
08-09-19, 18:15
Trust me, anxiety breaks all the rules when it comes to logic. I've felt weak and shaky most of today and I'm not worried in the least, because I know stress makes even the most basic tasks feel insurmountable.

I’m not just feeling shaky, I shake and pump lactic acid from doing almost nothing like my muscles are breaking down.

utrocket09
08-09-19, 18:17
I am not at all putting myself before my child. Iím super sad that my girlfriend canít have the happiness she deserves during her pregnancy. Itís killing me. Iíve been feeling physically ill and having ALS symptoms and nobody believes me and I just donít know what to do. I love my gf and would never do anything to hurt her. Youíre right that Iím sick.

No you actually are putting yourself before your child. Going on about an illness you do not have, and know nothing about. You are hurting both her and your child. You are going on forums for ALS for people whom actually have the disease. There are people whom are actually disabled and are dying from real illnesses, not made up ones.

utrocket09
08-09-19, 18:18
I’m not just feeling shaky, I shake and pump lactic acid from doing almost nothing like my muscles are breaking down.

If your muscles were that bad..you would not be carrying groceries.

BlueIris
08-09-19, 18:23
Seymour, a word of advice.

If one person says you're being irrational, there's a good chance they're wrong. If everyone says you're being irrational, though?

If you sincerely believed you could fly, would you think people should encourage you to jump off the roof?

Seymour
08-09-19, 18:50
Seymour, a word of advice.

If one person says you're being irrational, there's a good chance they're wrong. If everyone says you're being irrational, though?

If you sincerely believed you could fly, would you think people should encourage you to jump off the roof?

I understand what you are saying. What I don’t understand is why everybody thinks that widespread muscle twitching and weak leg muscles absolutely can’t be ALS symptoms even though they are if you read the data.

Why is everybody acting like I’m absolutely crazy saying this?

utrocket09
08-09-19, 19:00
I understand what you are saying. What I donít understand is why everybody thinks that widespread muscle twitching and weak leg muscles absolutely canít be ALS symptoms even though they are if you read the data.

Why is everybody acting like Iím absolutely crazy saying this?

Because muscles twitch from use or overuse as well. And if you read something over and over, you can make yourself believe something that is not true.

Fishmanpa
08-09-19, 19:04
Why is everybody acting like Iím absolutely crazy saying this?

Respectfully, because you're acting that way. Go see your GP. Get an EMG. "Told Ya So Gang" on standby ;)

Playing armchair psychiatrist here... Your girlfriend is pregnant. Is it safe to assume it wasn't planned? Becoming a parent and the responsibilities that come along with it are daunting under any circumstances to say the least. That is the root of all of this IMO. Time to do the responsible thing and treat your anxiety. I have real physical issues that can put me six feet under. You're doing that to yourself above ground and those around you are suffering because of it.

Positive thoughts

Seymour
08-09-19, 19:14
I hear you guys, I really do. I know how this looks and sounds cause ALS is so rare.

It started with a general ill feeling and dizziness three months ago. I felt like my legs were weaker and my right arm always felt like I bumped it. I also had twitches. Then I thought the twitches and weak legs were getting better.

Then two weeks ago it hit me like a truck. My legs overnight started feeling heavy, numb, sore, and like I was walking on cotton. They burned when I lay down in bed. And then it continued to reach a point last week where I thought I would collapse. Shaking legs when going down stairs. Feeling of weakness extending to buttock area.

And now this shakiness and achiness persists and doesn’t seem to want to go away and the twitching in thighs, arms, calfs is near constant.

I’m not making this up!

BlueIris
08-09-19, 19:20
Nobody thinks you're making this up, Seymour. But everything you describe can be the direct or indirect result of anxiety.

Fishmanpa
08-09-19, 19:24
I’m not making this up!

This is why you should stick to your original thread as it gives an overview to your situation... from your OP:


I went to the doctor about 10 days ago cause I was still mildly dizzy and I have strange sensations all over like someone flicking water on me. Happens most of the time on my leg but can also happen on arms, hands, face...

The GP did a basic neurological exam, reflexes, eye movements, walking on tip toes, all that jazz. She said everything was normal and that there was nothing indicative of MS so she didn’t want to order an MRI. She said my symptoms didn't sound like MS cause they were very mild and also MS wouldn’t present as small tingles all over that last a second but more like a whole leg tingling for hours or days.

A few days ago I went back to the same GP complaining about the same symptoms. She said I was a hypocondriac and sent me to the hospital... I ended up seeing two other doctors who did basic neuro exams and listened to my symptoms and diagnosed me with extreme health anxiety. Nobody even wants to send me for an MRI and everyone basically called me crazy. I had to see a psychiatrist in urgent care

Nuff said....

Positive thoughts

pulisa
08-09-19, 19:40
You had to see a psychiatrist in urgent care....Do you really want a repeat of this and face a potential question mark over your mental health stability when you are soon going to be a father and health professionals are involved?

pulisa
08-09-19, 19:47
I can see that you don't care about anyone else's experiences on here but think about your unborn child and at least explore the anxiety angle because otherwise you could regret it as your gf may just have had enough. Don't you think she would be urging you to make a neuro appt if she were worried?

Seymour
08-09-19, 19:52
Well this is the thing. They diagnosed me with health anxiety three months ago before I actually felt that weak. The legs thing is new. People treated me crazy because I cried.

I think people are usually dismissive with anxious people who bring up symptoms. Especially something as rare as ALS.

It’s not that I don’t believe people it’s just that I haven’t seen one story of anxiety that resembles mine symptoms-wise.

pulisa
08-09-19, 19:55
The "Yes..But" mindset of treatment-resistant (by the patient) HA

BlueIris
08-09-19, 19:55
That's classic health anxiety, though. Everyone - and I include myself here - always thinks that their experience is uniquely sinister.

I really worry for you right now.

Fishmanpa
08-09-19, 20:11
I havenít seen one story of anxiety that resembles mine symptoms-wise.

Have you actually read the boards at all? You're no different than 100's of other posters :lac:

Positive thoughts

pulisa
08-09-19, 20:26
Have you actually read the boards at all? You're no different than 100's of other posters :lac:

Positive thoughts

Precisely. Maybe spend some time reading the "neuro" threads on NMP rather than terrifying yourself reading about people who actually have a life-limiting neurological disease.

pulisa
08-09-19, 20:28
But you won't, I know.

Ow1984
08-09-19, 20:47
I advise you Seymour to go to the Doctors for your anxiety. I know I have posted on this thread and explained I went to doctors Friday but felt like I had no closure. But what it has done is slightly open my mind up a bit. I have now noticed that my twitching interdossei in my hand twitches a lot more when I have been doing something with my hand. I.e I played golf Friday and my finger was going mad after 3 holes and for a few hours after. It also done it at cricket yesterday after I had batted. Also done it today after cutting the lawn where I had a gripping motioning all the time. I'm hoping that this is me thinking more rationally and I'm correct. The doctor done some small strength tests (I had to grip his hand) his comments were " there is nothing wrong with your grip your actually very strong"
I just think the doctors might open your mind to other alternative options. I know I'm not over it and still in this rabbit hole but Im definitely trying to open my mind.

Hijikata
09-09-19, 00:43
At this point I honestly think this could be a troll based on how ridiculous it is

Seymour
09-09-19, 02:17
Not a troll just a genuinely anxious person with worrying symptoms.

I’m sorry everybody that I’ve been a pain.

tryingtosurvive1
09-09-19, 03:59
Person with scoliosis
Have you queried a scoliosis forum about your symptoms?
Do you have access to physical therapy?

Seymour
Do you have some trauma related to being a parent in your past?

I don't think either of you have ALS/MS.

Seymour
09-09-19, 04:25
Person with scoliosis
Have you queried a scoliosis forum about your symptoms?
Do you have access to physical therapy?

Seymour
Do you have some trauma related to being a parent in your past?

I don't think either of you have ALS/MS.

No I was actually looking forward to it before getting sick.

Still unsure how people can flat out say I don’t have ALS when I have muscle weakness progressing in legs making walking difficult and lots of fasciculations.

lofwyr
09-09-19, 04:31
No I was actually looking forward to it before getting sick.

Still unsure how people can flat out say I don’t have ALS when I have muscle weakness progressing in legs making walking difficult and lots of fasciculations.

The point is this. If you have it, then go deal with it. Find the medical diagnosis you are sure you have and deal with it.

If you are not willing to accept this could be anxiety and deal with the anxiety, why are you even bothering posting? This is not an ALS forum, none of us have had it, none of us deal with it, none of us can treat, diagnose or offer medical advice to you.

So, you either have it, in which case this is not the place you need to be, or you don't and you need to accept this could be anxiety and deal with it accordingly. There isn't much else to say about it, honestly.

Seymour
09-09-19, 04:44
You’re right.

HelloPanda23
09-09-19, 05:03
With all due respect, you donít understand how ALS works. ALS affects a single part of your body, then moves on to another. It canít affect multiple partsof your body at the same time. Not only this, but ALS has no warning symptoms. If you have ALS, you will not be able to stand on one leg or hold something on one hand. If you can do those, then you donít have ALS. Itís as simple as that. The symptoms you keep worrying about are caused by anxiety. I had terrible symptoms during my episode of ALS, and I literally felt pain on my legs everyday. Sometimes Iíd concentrate onto my arms so much that they would start to hurt when I moved them. Even so, why do you care? Do you think that there is a cure for ALS if youíre diagnosed early? If you have ALS, then you have ALS. You canít do anything about it, and you will eventually die because of it. Since thatís the case, why are you even rushing for a diagnosis? Look, Iím 100% sure you donít have ALS, if you donít believe me, get an EMG and move on with your life. If after getting an EMG you still believe you have ALS, I recommend you get help for your severe anxiety. Good luck.

Seymour
09-09-19, 05:14
So you’re saying ALS can’t affect both legs at the same time? Why not? Just trying to understand better.

Hijikata
09-09-19, 06:38
Beyond help

utrocket09
09-09-19, 11:48
No I was actually looking forward to it before getting sick.

Still unsure how people can flat out say I donít have ALS when I have muscle weakness progressing in legs making walking difficult and lots of fasciculations.


One, ALS affects one part of the body at a time not both. Also does not cause pain. You already went to a Dr a few months ago and were cleared. What more do you want? Go spend sometime with your girlfriend and unborn baby.

Fishmanpa
09-09-19, 13:12
Still unsure how people can flat out say I donít have ALS

Besides not actually having the symptoms as outlined HERE (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!), There's this:


I went to the doctor about 10 days ago cause I was still mildly dizzy and I have strange sensations all over like someone flicking water on me. Happens most of the time on my leg but can also happen on arms, hands, face...

The GP did a basic neurological exam, reflexes, eye movements, walking on tip toes, all that jazz. She said everything was normal and that there was nothing indicative of MS so she didnít want to order an MRI. She said my symptoms didn't sound like MS cause they were very mild and also MS wouldnít present as small tingles all over that last a second but more like a whole leg tingling for hours or days.

A few days ago I went back to the same GP complaining about the same symptoms. She said I was a hypocondriac and sent me to the hospital... I ended up seeing two other doctors who did basic neuro exams and listened to my symptoms and diagnosed me with extreme health anxiety. Nobody even wants to send me for an MRI and everyone basically called me crazy. I had to see a psychiatrist in urgent care

And the fact you're posting on an anxiety forum :whistles:


Positive thoughts

Seymour
09-09-19, 14:48
One, ALS affects one part of the body at a time not both. Also does not cause pain. You already went to a Dr a few months ago and were cleared. What more do you want? Go spend sometime with your girlfriend and unborn baby.

I thought it could affect both legs at the same time

utrocket09
09-09-19, 15:15
I thought it could affect both legs at the same time

No. You are also ignoring what Fish posted above.

BlueIris
09-09-19, 15:16
Seymour, serious question: would you like to stop feeling afraid?

Seymour
09-09-19, 15:35
Seymour, serious question: would you like to stop feeling afraid?

I would like nothing more.

Seymour
09-09-19, 15:39
My girlfriend wants me to accompany her to her sister’s birthday tonight but I’m super anxious and all I can think about is my symptoms and ALS. I’m so tired I wish I wouldn’t wake up.

BlueIris
09-09-19, 15:39
Then regardless of whether you're sick (and I don't believe for a second believe you are after all those medical professionals have said you're not), you HAVE to start working actively on wrangling your anxiety.

Life will always be full of frightening occurrences, so if you want not to be wretchedly unhappy you need to take steps to learn to cope with them better.

Seymour
09-09-19, 15:48
I know. When I was examined though it was very early on when I only had dizziness. It has become a lot worse since. The scariest part is the fasciculations. They’re like almost constant.

Whether or not I’m truly sick I’m still an anxious mess either way. I pray every day that some miracle will happen and I will die in my sleep.

Fishmanpa
09-09-19, 15:53
I pray every day that some miracle will happen and I will die in my sleep.

Saying things like this is very serious and disturbing. Please check THIS (https://cmha.ca/find-your-cmha) out. Pick up the phone and get some help!

Positive thoughts

BlueIris
09-09-19, 16:13
Agreeing with FMP here.

I struggle with suicidal ideation myself; it's the source of many intrusive thoughts for me. At best, this is exhausting, at worst, it's utterly draining. Nevertheless, I recognise at all points that I never want to die, I simply want not to be in pain.

If you're capable of making the same distinction, you owe it to the people around you to get yourself to a point where it's less of a problem for you. If you're not capable of drawing the line and really do believe you want to die, GET HELP NOW, as there is nothing anybody on an anxiety forum can do for you.

Seymour
09-09-19, 16:31
I just feel terrible physically and it’s not getting any better. I have fasciculations all over which is a bad sign.

I feel like life is over and I imagine my girlfriend raising my child with another man after I’m gone or disabled.

She doesn’t want to hear anything about this and says she’ll stand by me no matter what if I make the effort mentally.

utrocket09
09-09-19, 16:51
I just feel terrible physically and itís not getting any better. I have fasciculations all over which is a bad sign.

I feel like life is over and I imagine my girlfriend raising my child with another man after Iím gone or disabled.

She doesnít want to hear anything about this and says sheíll stand by me no matter what if I make the effort mentally.

You are neither dying or disabled. As someone whom used to assess people with mental illness, I would send you to a hospital to be assesed. Not for your physical health, but your mental health. You need to go to be seen.

Seymour
09-09-19, 17:04
But what about the fasciculations this is not normal right? I never used to have them.

BlueIris
09-09-19, 17:10
You probably never used to have chest hair, either. Our bodies change as we age.

The twitching is only a big deal because you've decided it is.

Fishmanpa
09-09-19, 17:13
You probably never used to have chest hair, either. Our bodies change as we age.

Wait until it starts growing from your ears and nose profusely! :roflmao:

Positive thoughts

Ow1984
09-09-19, 17:13
But what about the fasciculations this is not normal right? I never used to have them.

I don't know if they are normal or not, but what I do know is you need to go to the doctors. I had my blood tests this morning for my twitching / fasciculations. I have since last night started twitching periodically in my calf muscle ( never happened before) and my left shoulder ( never happened before) also had my Eye today. As I type this my calf has just spasmed. A website / Forum I have also read recently is BFS Forum. there are lots of people with twitching all over. There is a good post on there which is "why you don't have ALS PArt 1 & 2" and also "BFS in a nutshell" .

I also spoke to the nurse taking my blood who mentioned anxiety can do some strange things and make you extremely hypersensitive.

Seymour
09-09-19, 17:23
Itís because I read all over that fasciculations are a sign of motor neuron disease and now I have stiff wobbly legs to go with it so Iím freaking out about the combination.

BlueIris
09-09-19, 17:33
You're freaking out because you've read stuff.

Not reading these things is genuinely a very effective way of dealing with these sorts of problems.

Seymour
09-09-19, 17:35
But you understand why I’m freaking out? I have twitches and signs of weakness.

Fishmanpa
09-09-19, 17:39
Seymour, this is bordering on ridiculous now. You know it, I know it, everyone here knows it :lac: You're too deep in the rabbit hole to see the light of day :( Nothing said is helping, you took over someone else's thread and it's just going around and around in circles. It's seriously time to treat the very obvious diagnosed illness. Do it for yourself, your girlfriend and your unborn child.

Positive thoughts

Seymour
09-09-19, 18:23
You’re right.

Actually I just took a 4km (2.5 miles) walk with my girlfriend and accompanied her to an appointment and did some groceries again and she was happy that I made the effort to come with her after weeks of not getting out of the house and doing groceries online.

I didn’t collapse but my legs burned and felt very wobbly and now they twitch as I rest them.

pulisa
09-09-19, 19:38
I thought you did a bit of car shopping recently?

AJG
09-09-19, 19:41
I saw a neurologist today. I actually saw 2. Presented all my history, current issues, medication, tests. He did a reflex test on me and my limbs are hyper, no clonus. The fact that my MRIs were clean, my age, my strength tests which I passed, he said I have absolutely no ALS or any other neurological disorder. He repeated this with confidence. Actually both doctors did. I am sensitive to ssris and my anxiety can be causing these symptoms. He said we all have these odd sensations but when your anxious they amplify that much more. He said he wouldn't even advise me to do a nerve study and that it will be a waste of my time. Since I increased my zoloft dose, i feel higher than a kite. I'm jittery, hyper alert, wired and have various other symptoms aches and pains. I look like as if Ive been shooting heroin and going through detox right now. He told me to lower my dose.The most I might have is Benign Fasculation syndrome and a poor system for ssris. I will believe these doctors and stop obsessing. Eventually I will need to come off these ssris as they have done a nightmare on my body. My boyfriend was with me and it was good as he was able to hear more than what I was absorbing. These body sensations still freak me out but all I know is that the doctor is beyond confident I dont have anything except anxiety and depression. He took a good hour talking to me and testing me. I have to believe the professionals at some point.

Fishmanpa
09-09-19, 19:51
I know is that the doctor is beyond confident I dont have anything except anxiety and depression. He took a good hour talking to me and testing me. I have to believe the professionals at some point.

That's good news on the physical front and you're taking steps to address the mental aspects which is admirable. As you can see from the direction your thread has taken, the ALS rabbit hole is not a place you want to be.

Positive thoughts

Seymour
09-09-19, 20:18
I saw a neurologist today. I actually saw 2. Presented all my history, current issues, medication, tests. He did a reflex test on me and my limbs are hyper, no clonus. The fact that my MRIs were clean, my age, my strength tests which I passed, he said I have absolutely no ALS or any other neurological disorder. He repeated this with confidence. Actually both doctors did. I am sensitive to ssris and my anxiety can be causing these symptoms. He said we all have these odd sensations but when your anxious they amplify that much more. He said he wouldn't even advise me to do a nerve study and that it will be a waste of my time. Since I increased my zoloft dose, i feel higher than a kite. I'm jittery, hyper alert, wired and have various other symptoms aches and pains. I look like as if Ive been shooting heroin and going through detox right now. He told me to lower my dose.The most I might have is Benign Fasculation syndrome and a poor system for ssris. I will believe these doctors and stop obsessing. Eventually I will need to come off these ssris as they have done a nightmare on my body. My boyfriend was with me and it was good as he was able to hear more than what I was absorbing. These body sensations still freak me out but all I know is that the doctor is beyond confident I dont have anything except anxiety and depression. He took a good hour talking to me and testing me. I have to believe the professionals at some point.

Happy for you. I think you never experienced weakness anyway? Am I wrong?

Seymour
09-09-19, 20:19
I thought you did a bit of car shopping recently?

Yeah a while ago before I stopped going outside.

utrocket09
09-09-19, 20:42
Youíre right.

Actually I just took a 4km (2.5 miles) walk with my girlfriend and accompanied her to an appointment and did some groceries again and she was happy that I made the effort to come with her after weeks of not getting out of the house and doing groceries online.

I didnít collapse but my legs burned and felt very wobbly and now they twitch as I rest them.

If you can walk over 2 miles...you donít have ALS. You have a mental illness.

Seymour
09-09-19, 21:10
If you can walk over 2 miles...you don’t have ALS. You have a mental illness.

Some people with early ALS can still do things though they just struggle more. I’m not saying this to be a contrarian I swear.

utrocket09
09-09-19, 21:21
Some people with early ALS can still do things though they just struggle more. Iím not saying this to be a contrarian I swear.

No you are saying this as a slap in the face to people with actual ALS. If you actually had muscle weakness, believe you be able to see something. You were not only able to carry groceries, but walk over 2 miles.

You not only are sick, you hijacked someone elses thread, and continue to ignore the idea that there is nothing wrong other than HA.

Seymour
09-09-19, 22:52
I would never say something as a slap in the face of people with ALS. I am not a mean person.

utrocket09
09-09-19, 23:01
I would never say something as a slap in the face of people with ALS. I am not a mean person.

You are acting like you have a serious illness that you do not have, thus it is a slap in the face of those with ALS. You are being mean and are very misguided.

AJG
09-09-19, 23:02
I actually had muscle weakness. I had muscle breakdown. I had moments and still do where I did a push up and my left arm started to shake or I went on an 11 minute bike ride and couldn't continue as I was so out of breath. I lifted a pop can and my hand was trembling. That is all perceived weakness. One thing that really reassured me that it is actually true twitching in ALS is the last thing, by then you would not be able to move that body part. All over twitching is not a sign of ALS. Also what the neurologist said is that when you have clear MRIs those are all good signs. It is actually not 100% true that you need a nerve study. I have very hyper reflexes and he said not to worry they are symmetrical. I have no clonus in my limbs. He said it very well when your super anxious everthing in your body just amplifies. Everyone gets twitches, tingling, numbness etc but most people do not pay attention to it. I can say that is true. I have so many weird aches, pains, numbness, tremors, twitches, muscle pains but it all can be stress induced as explained and also caused by ssri medication. I'm still scared of my bodily sensations but I need to calm my brain down as I am tuned up. This is the only way to recovery. Two days ago I felt weak where I had a hard time holding my hair dryer. Today I felt so much energy and had no issue doing that task. However, even after getting the good news my left hand was shaking so much it felt like I could not hold on to my tea mug. In the morning I dropped a bunch of stuff as I was nervous before the appointment. I seen literally at least 7 doctors in total and they all said the same thing. One big piece of it is do not google symptoms. I learned it the hard way because I always need to know. It is part of my personality.

Seymour
09-09-19, 23:06
I am not acting like it I’m scared. I have twitches even in my face now and feel like I struggle with face muscles.

Also when I bend down my legs shake from weakness.

Combined with the fasciculations why am I not allowed to be scared.

Fishmanpa
09-09-19, 23:12
Some people with early ALS can still do things though they just struggle more.

Totally false! Don't be "that guy".

Clinical Weakness—ALS is about failing, not feeling.

ALS is about failure—falling down, being unable to stand on your toes, being unable to button your shirt, being unable to lift your hand, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work


Positive thoughts

nomorepanic
09-09-19, 23:32
I am not going to spend hours reading all the posts but why haven't you seen a doctor about all of this yet?

Fishmanpa
09-09-19, 23:55
I am not going to spend hours reading all the posts but why haven't you seen a doctor about all of this yet?

From his own thread on the subject before he hijacked this one...


I went to the doctor about 10 days ago cause I was still mildly dizzy and I have strange sensations all over like someone flicking water on me. Happens most of the time on my leg but can also happen on arms, hands, face...

The GP did a basic neurological exam, reflexes, eye movements, walking on tip toes, all that jazz. She said everything was normal and that there was nothing indicative of MS so she didn’t want to order an MRI. She said my symptoms didn't sound like MS cause they were very mild and also MS wouldn’t present as small tingles all over that last a second but more like a whole leg tingling for hours or days.

A few days ago I went back to the same GP complaining about the same symptoms. She said I was a hypocondriac and sent me to the hospital... I ended up seeing two other doctors who did basic neuro exams and listened to my symptoms and diagnosed me with extreme health anxiety. Nobody even wants to send me for an MRI and everyone basically called me crazy. I had to see a psychiatrist in urgent care

Positive thoughts

Seymour
10-09-19, 00:01
I’m meeting a neurologist in 6 weeks.

nomorepanic
10-09-19, 12:24
Ahhh ok thanks FMP so you don't need to see anyone else then really.

Seymour
10-09-19, 15:51
These appointments were in June when I only had dizziness and some paresthesia. I haven’t had any examination since developing weak, burning, shaky legs and body-wide twitches.

Seeing my rheumatologist in two weeks though and will try to get her to assess my strength.

BlueIris
10-09-19, 15:56
I'm really sorry this has taken this sort of a hold of you.

Seymour
10-09-19, 16:04
Yes it is very bad. Iím off work, I spend my days worrying and reading forums compulsively to find similar symptoms to mine (and I never do which is worrying), I donít engage with friends and family and when I do I often hide in the bathroom to do more research on my phone.

I twitch all day and every twitch confirms I have the disease. I donít make plans for the future as I have convinced myself I will be handicapped or dead. I donít read, watch movies or anything I used to love.

I wish I could just drop it. I just canít find any explanation for all the twitches and the legs being shaky and sore and the overall progressive weakness throughout my body.

BlueIris
10-09-19, 16:08
People here have been trying to explain - heck, medical professionals have tried to explain - but you're clearly not in a place where you're able to take it on board.

It must be an awful way to live, and I hope you find your way out soon.

Seymour
10-09-19, 16:19
You mean this could all be caused by this constant anxiety?

Fishmanpa
10-09-19, 16:22
You mean this could all be caused by this constant anxiety?

Have you read THIS? (https://www.nomorepanic.co.uk/articles/symptoms)

Positive thoughts

BlueIris
10-09-19, 16:24
Absolutely, yes, my own anxiety frequently makes me feel as though I'm going to collapse from sheer exhaustion.

It's vile, I hate it, but in the end I'm the sole earner in my household so I don't have any choice about carrying on even when I'm so tired and shaky I can't think straight. Sometimes being at work and interacting with friendly people (or helping others out) can really help alleviate the symptoms, too.

Think about it; your hindbrain is constantly telling you you're dying, and your body is responding with the appropriate signals. It's as though you're living your life in a near-permanent state of heightened adrenaline, as though you're trying to win the Olympic 100m. Of course it makes you feel horrendous.

Seymour
10-09-19, 16:30
Yes I see. My legs actually feel like they’re overdosing on cortisol and lactic acid.

Fishmanpa
10-09-19, 16:43
My legs actually feel like they’re overdosing on cortisol and lactic acid.

Muscles, muscle tension, stiffness, muscle twitching, tight scalp or neckWhat you feel:You feel like your muscles are always tight or strained, sometimes to the point of frequent pain, or even persistent and ongoing pain. Some may also find the pain so restricting and debilitating that it prevents physical activity, and sometimes to the point of becoming bed ridden. It’s also common to experience pain or cramps in any of the body’s muscles.
A particular joint in your body feels unusually stiff and sore, or hard to move. It may even feel arthritic. Sometimes you feel you may be ‘seizing up’.
For no apparent reason, a particular muscle will begin to twitch. This twitching will continue for an unusual amount of time before it stops of its own accord. Sometimes it twitches so long it becomes sore, and may continue on and off for days.
You may feel that your scalp is sore, has shooting pains, or that the back of your neck and head are very tense. Even though there is no apparent reason for this, they continue to.
What causes this:Stress biology causes muscles to contract (tighten) so that the body is more resilient to an attack. The higher the stress biology, the more tense the muscles will be. Some people experience mild tenseness while others may experience great pain, sometimes to the point of immobility. Others experience uncontrollable muscle twitching. It can be one particular muscle over and over again, or it can be a wide variety of muscles. Sometimes the twitching can last for days.
Regular exercise helps to keep tight muscles relaxed. Some find relief through massage therapy or warm baths.
As with all symptoms, when the nervous system gets sufficient rest, this symptom will diminish and eventually subside.

Seymour
10-09-19, 16:54
What worries me is that throughout all my years of anxiety I’ve never experienced such symptoms.

nomorepanic
10-09-19, 17:00
That doesn't mean you won't though.

Seymour
10-09-19, 17:08
It is by far my worse anxiety episode I’ve ever had.

And I noticed last night that every single time I close my right eye and wink, it starts twitching after. What on Earth could make my body go crazy like this? Eye muscles aren’t even affected in ALS usually.

Fishmanpa
10-09-19, 17:09
What worries me is that throughout all my years of anxiety I’ve never experienced such symptoms.

Anxiety, like physical issues can and do have a cumulative negative affect on the body. There's only so much it can take before something snaps. In all the years you've had anxiety (and you are admitting to this being anxiety issue whether you realize it or not), did you ever think it would leave you basically housebound and bedridden?

You need help. You can only get that in real life.

Positive thoughts

nomorepanic
10-09-19, 18:07
That is a common anxiety symptom and no you don't have ALS still.

Why are you not treating the anxiety?

Seymour
10-09-19, 18:14
I am actually seeing a therapist and taking Zoloft but I’m so far down the rabbit hole that it flies right by me. Nothing seems to work.

nomorepanic
10-09-19, 18:14
Well you have to put the work in as well which I assume you are?

Fishmanpa
10-09-19, 18:42
You need to tell/show your therapist your posts and discuss your participation on the forum, googling and the reassurance seeking. You're just shooting yourself in the foot here and should be spending the time you spend here on working on the techniques and recommendations of your therapist.

Positive thoughts

Seymour
10-09-19, 19:29
I feel like my only way out of this is getting the all clear from a neurologist. The soreness and burning and shaking and weakness are not normal. Maybe it’s anxiety but that would be terrible symptoms to get.

BlueIris
10-09-19, 19:36
Do you honestly think you'll believe the neurologist when they give you the all clear?

darkside4k
10-09-19, 22:49
Seymour we actually have very similar symptoms. I have muscle burning / fatigue plus twitching in my legs and arms. I also sometimes feel tingly / weird in my face though when I pinch it it is not totally numb or anything. I also am fearing ALS, MS, or a brain tumor.

lofwyr
10-09-19, 22:54
Seymour we actually have very similar symptoms. I have muscle burning / fatigue plus twitching in my legs and arms. I also sometimes feel tingly / weird in my face though when I pinch it it is not totally numb or anything. I also am fearing ALS, MS, or a brain tumor.

I have had literally every symptom you mentioned for at least a decade on a routine basis, even when not feeling anxious, and much worse when my anxiety flares. They are as common as anything with anxiety. My doctor even asked me--unsolicited--when I told him about these symptoms, "do you have issues with anxiety? That is my first suspicion." He had no prior knowledge of my anxiety issues. Totally blind to my anxiety, a physician called it out of the chute. Never even thought of ALS or MS, primarily because there isn't anything you can do for ALS, and I know a few people with MS, and while it would suck, it isn't the worst thing in the world that can happen to you.

darkside4k
10-09-19, 23:17
Even worse than you Seymour, I'm now having tingling on the right side of my face.

utrocket09
10-09-19, 23:20
Even worse than you Seymour, I'm now having tingling on the right side of my face.

This thread is becoming a joke. You can having tingling with anxiety. 🙄🙄🙄🙄

Fishmanpa
10-09-19, 23:22
This thread is becoming a joke.

And the OP has been basically taken out of the thread!

Positive thoughts

Seymour
10-09-19, 23:48
I have had literally every symptom you mentioned for at least a decade on a routine basis, even when not feeling anxious, and much worse when my anxiety flares. They are as common as anything with anxiety. My doctor even asked me--unsolicited--when I told him about these symptoms, "do you have issues with anxiety? That is my first suspicion." He had no prior knowledge of my anxiety issues. Totally blind to my anxiety, a physician called it out of the chute. Never even thought of ALS or MS, primarily because there isn't anything you can do for ALS, and I know a few people with MS, and while it would suck, it isn't the worst thing in the world that can happen to you.

You’ve had all these symptoms?

- Legs shake when bending in squat position and never used to
- Right arm spasms
- Legs wobbly when walking and going down stairs
- Legs feeling sun burnt and numb
- Muscle twitches in legs, arms, face and feet
- Overall shakiness every time I have to hold a position or balance on a limb

Hijikata
11-09-19, 00:48
Lol surely this thread should be closed. It ain’t helping anyone

darkside4k
11-09-19, 02:43
I honestly have a lot those symptoms and more. Arm fatigue and muscle burning... hand cramping...

MyNameIsTerry
11-09-19, 02:48
Youíve had all these symptoms?

- Legs shake when bending in squat position and never used to
- Right arm spasms
- Legs wobbly when walking and going down stairs
- Legs feeling sun burnt and numb
- Muscle twitches in legs, arms, face and feet
- Overall shakiness every time I have to hold a position or balance on a limb

Yep, been there, done that.

Seymour
11-09-19, 02:53
Yep, been there, done that.

Seriously? Cause they all point to ALS.

Fishmanpa
11-09-19, 02:58
Lol surely this thread should be closed. It ainít helping anyone

I agree. The OP has been taken out of the conversation and it's just become a revolving wheel of reassurance seeking. There's really nothing more that can be said :shrug:

Positive thoughts

MyNameIsTerry
11-09-19, 03:02
Seriously? Cause they all point to ALS.

Yep, and they obviously don't just point to ALS as years on I'm fine.

The symptoms you mention also point to general weaknesses. If I hit the weights hard I could bring all of those on with DOMS. You've only got to watch the London marathon to see the wobbly legs on some at the end. And anxiety takes a massive told on the body as well as leaches various minerals out which can mean lots of symptoms including the ones you mention, which I've seen many on here mention in my time here.

With my anxiety I have found myself knackered just walking up the stairs. I spent a couple of months doing nothing in the house unable to go out ro do much of anything. When I got back out I felt unable to do much walking and felt very weak. It's like when someone has an injury they have to do the physio because the strength very quickly goes.

Seymour
11-09-19, 03:28
Yes I do feel completely weak and have barely gone out in months. But the twitching started before I was that bad. My muscles just don’t feel right. They feel like jelly. I never felt that way.

lofwyr
11-09-19, 04:34
Youíve had all these symptoms?

- Legs shake when bending in squat position and never used to
- Right arm spasms
- Legs wobbly when walking and going down stairs
- Legs feeling sun burnt and numb
- Muscle twitches in legs, arms, face and feet
- Overall shakiness every time I have to hold a position or balance on a limb

Absolutely. I have a few of them as I type this too. Every single symptom you mentioned is an anxiety symptom.

Every.

Single.

One.

But I am going to give you some hard advice now. You need real help, nothing this forum can give you is going to provide that. You need to call someone, get therapy going, do something to fight the ANXIETY.

lofwyr
11-09-19, 04:35
I agree. The OP has been taken out of the conversation and it's just become a revolving wheel of reassurance seeking. There's really nothing more that can be said :shrug:

Positive thoughts

Absolutely agree. It is actually a pretty good demonstration of how this place can go wrong if it isn't used constructively.

darkside4k
11-09-19, 13:34
I now have near constant pains in both legs, both hands, neck, and feet. Does this sound like ALS? Brain tumor?

BlueIris
11-09-19, 14:19
Both, Darkside, and possibly also the bubonic plague.

utrocket09
11-09-19, 15:10
I now have near constant pains in both legs, both hands, neck, and feet. Does this sound like ALS? Brain tumor?

No sounds like a hypochondriac with nothing to do to keep themselves busy.

AJG
11-09-19, 15:39
I dont think that people who have health anxiety really feel reassured by any professional in general but at some point we really need to trust doctors and not google. There is a reason we have doctors and they went to medical school. I still feel like shit and have every symptom listed by everyone on this forum. Reality is my symptoms are 100x worse as a result of my anti depressant medication. I don't know if anyone experiencing these symptoms has been on meds is on meds or in the middle of withdrawal but believe it or not it can be cause by all this stuff in your body as well. I really believe that now given how I've been feeling on this new medication. I lay in bed and my limbs jerk, twitchy muscles amplified, headaches in the morning, by 11 am I 'm going to be filled with energy as it is a pattern, then the shakes start. I'm going today to re-evaluate these meds as I had a decrease of symptoms during my withdrawal of my first course of meds. Medication started all this fun stuff for me but being a hypochondriac I decided to believe I must be ill and not link the recent change. I'm on month 4 of this I would imagine if I actually had the 3 letter word I'd be unable to do stuff or would have some mobility issues. Anxiety is brutal and scary and it can cause so many crazy physical symptoms in your body. I did not want to believe it either, still a skeptic but it is more likely than ALS. We are here because we have anxiety. What is the likelihood of us all having similar symptoms and having ALS probably very slim. The common thing we do share as a fact is anxiety.

Fishmanpa
11-09-19, 16:18
I dont think that people who have health anxiety really feel reassured by any professional in general but at some point we really need to trust doctors and not google. There is a reason we have doctors and they went to medical school. I still feel like shit and have every symptom listed by everyone on this forum. Reality is my symptoms are 100x worse as a result of my anti depressant medication. I don't know if anyone experiencing these symptoms has been on meds is on meds or in the middle of withdrawal but believe it or not it can be cause by all this stuff in your body as well. I really believe that now given how I've been feeling on this new medication. I lay in bed and my limbs jerk, twitchy muscles amplified, headaches in the morning, by 11 am I 'm going to be filled with energy as it is a pattern, then the shakes start. I'm going today to re-evaluate these meds as I had a decrease of symptoms during my withdrawal of my first course of meds. Medication started all this fun stuff for me but being a hypochondriac I decided to believe I must be ill and not link the recent change. I'm on month 4 of this I would imagine if I actually had the 3 letter word I'd be unable to do stuff or would have some mobility issues. Anxiety is brutal and scary and it can cause so many crazy physical symptoms in your body. I did not want to believe it either, still a skeptic but it is more likely than ALS. We are here because we have anxiety. What is the likelihood of us all having similar symptoms and having ALS probably very slim. The common thing we do share as a fact is anxiety.

Wise and rational words that I'm afraid will fall on irrationally deaf ears.

Positive thoughts

AJG
11-09-19, 18:06
I had another doctor appointment a rheumatologist to discuss my previous rhabdomyalysis. After I told her my story she is also convinced my meds and the withdrawal is causing all these issues. SSRIs are not a class for me. She checked my reflexes again hyper but symetrical did strength tests as well. When I told her I had a worry about ALS she said you don't have it and that's before telling her I already seen a neurologist. So i think I need to get off my meds suffer for few more months or so until my central nervous system just kicks back into a semi normal state. She also told me to taper off my meds as I'm having every bad symptom listed. My rhabdo she said could of been a mild brush with seretonin syndrome.

Fishmanpa
11-09-19, 21:26
As much as meds benefit many, there are some they just don't agree with. Glad they determined the cause and it sounds like you have a handle on things.

Positive thoughts

Seymour
12-09-19, 19:55
I came across this quote from a member here who explains very well what I am experiencing:

"I have had weak feeling/shaky legs for nearly 2 years now when I had my baby, but the last few months it started feeling worse, then it was my arms too, then my stomach.. now it's all of them when I move, nod head up and down, my body physically shakes from the exertion. And getting up from lying/slouching position really makes me feel like my body is working so hard)
I've also got very bad anxiety feelings of nervousness currently (due to worrying about all this I think) - I have been stressing about it and also been having some other stressful thoughts in recent times.

It's been making me worry so much, it's basically my whole body -my arms if I reach for something, my body if I bend over -weak and shaky, and I am feeling super fatigued with it and exhausted. My muscles also seem to quiver inside when I'm just at rest in bed, especially in my legs! Literally been in bed loads today and hardly feeling able to do simple things."

Scass
12-09-19, 20:06
So, do you think this adds to your anxiety because you are worried about your symptoms, or do you think that any of your symptoms are caused by anxiety?

Fishmanpa
12-09-19, 20:28
I came across this quote from a member here who explains very well what I am experiencing:

I came across this quote from a member here that explains very well the reason you're experiencing these symptoms.


I went to the doctor about 10 days ago cause I was still mildly dizzy and I have strange sensations all over like someone flicking water on me. Happens most of the time on my leg but can also happen on arms, hands, face...

The GP did a basic neurological exam, reflexes, eye movements, walking on tip toes, all that jazz. She said everything was normal and that there was nothing indicative of MS so she didn’t want to order an MRI. She said my symptoms didn't sound like MS cause they were very mild and also MS wouldn’t present as small tingles all over that last a second but more like a whole leg tingling for hours or days.

A few days ago I went back to the same GP complaining about the same symptoms. She said I was a hypocondriac and sent me to the hospital... I ended up seeing two other doctors who did basic neuro exams and listened to my symptoms and diagnosed me with extreme health anxiety. Nobody even wants to send me for an MRI and everyone basically called me crazy. I had to see a psychiatrist in urgent care

Positive thoughts

Seymour
12-09-19, 21:15
So, do you think this adds to your anxiety because you are worried about your symptoms, or do you think that any of your symptoms are caused by anxiety?

I don’t know. I think my problem is physical but that freaking out about it doesn’t help.

Is it possible to actually become sick and atrophied from lying down all day and eating very little? I mean that wouldn’t cause soreness and muscle twitches though?

BlueIris
12-09-19, 21:23
Of course it is, Seymour. You're neglecting yourself horribly so of course your physical health is going to suffer.

Seymour
12-09-19, 21:51
But that wouldn’t explain the twitches weakness and sore legs?

BlueIris
12-09-19, 21:55
I give up, Seymour, I'm tired of going round in circles like this.

If it's easier for you to act as though you're already dying, so be it. You're ruining your own health, though, by behaving ridiculously over a bunch of minor bodily symptoms, and it's all a little bit embarrassing.

Fishmanpa
12-09-19, 22:03
But that wouldn’t explain the twitches weakness and sore legs?

I'm a cancer survivor. I lost 70 pounds in just a few months during treatment. My muscles wasted away, I had to take my meds and nourishment through a feeding tube. For several months, I barely had the strength to move. When I finally was able to muster the energy to do so, I had every symptom you're experiencing and then some. Not once did I think it was sinister. You've essentially wasted away by being bed and sofa bound for three months. Add the physical effects of extreme anxiety and here you are.

I give up too.... Having been through what I've been through, it's actually insulting at this point. I'm sure there will be plenty of members to feed your dragon so carry on.

Good luck and as always...

Positive thoughts

Seymour
12-09-19, 22:50
You guys have been great I’m sorry I’m such a mess. I truly think I’m not conveying how bad my twitches and leg weakness are but I understand that there’s no point in repeating the same things.

Hijikata
13-09-19, 01:00
mate you don’t have ALS. You are ruining your life over something that only exists in your head. I feel sorry for your wife if this is how you behave when nothing is wrong, I can only imagine how you would if something was actually wrong. There is no point in you being here if you are just going to ignore what everyone is saying because you somehow feel like your the exception, the rarity, the 1 in 100,000. What you will find with health anxiety is you always have the vague symptoms, the ones that can be caused by almost anything. You never have the “oh shit” symptoms. You need to do something about your anxiety man because honestly you have behaved embarrassingly and insultingly throughout this entire thread and you are gonna look back on this in a couple of months and think “what was I doing?”. Just got to relax man there is nothing seriously wrong with you

Seymour
13-09-19, 15:00
What would you consider a "oh shit" symptom?

I have popcorn twitches and waves in both my thighs and constant burning, weakness and stiffness in legs. You mean because I haven’t experienced a fall or drop foot?

darkside4k
13-09-19, 15:38
I also have constant burning and stiffness in my legs. Also twitching. Has been going on a week now.

nomorepanic
13-09-19, 17:24
So what would the chances of 2 or more members on an ANXIETY site all having ALS at the same time be as opposed to an anxiety symptom? Ask yourselves that

utrocket09
13-09-19, 17:25
So what would the chances of 2 or more members on an ANXIETY site all having ALS at the same time be as opposed to an anxiety symptom? Ask yourselves that

Exactly. Now they are feeding off each other.

Fishmanpa
13-09-19, 17:40
Exactly. Now they are feeding off each other.

Exactly. The OP's thread has been hijacked and it's become a dragon feeding trough. Best they PM each other.

Positive thoughts

Seymour
13-09-19, 18:02
So what would the chances of 2 or more members on an ANXIETY site all having ALS at the same time be as opposed to an anxiety symptom? Ask yourselves that

You know if it was only the twitching or only the weakness or soreness I might not freak out like that but I just can’t see any other condition causing persistent fasciculations and weakness problems. I literally pop all over my body especially the legs which is where the soreness is located. Granted I am young at 33 for ALS but it happens and I already have another auto-immune condition.

Scass
13-09-19, 18:12
You know if it was only the twitching or only the weakness or soreness I might not freak out like that but I just canít see any other condition causing persistent fasciculations and weakness problems. I literally pop all over my body especially the legs which is where the soreness is located. Granted I am young at 33 for ALS but it happens and I already have another auto-immune condition.

Seymour you refuse to believe that anyone else might know better.

What would help you more on this site about anxiety, is if you discussed your anxiety instead of your ALS. Because this is not an ALS forum.

nomorepanic
13-09-19, 18:29
Ok you have ALS - what next? No point posting on an anxiety forum cos you don't have that clearly.

Seymour
13-09-19, 19:26
Seymour you refuse to believe that anyone else might know better.

What would help you more on this site about anxiety, is if you discussed your anxiety instead of your ALS. Because this is not an ALS forum.

Not saying nobody knows better but I have searched the archives for days trying to find someone with both fasciculations AND pain/weakness and have found zero. I can’t find anything reassuring or resembling my case.

Seymour
13-09-19, 20:03
I just want this to stop. I want to be like I was before. I’m so scared and tired. I want my life back, I want my body to stop being weak and painful. I want happiness with my girlfriend and future child. I want to go out with friends. I want to work again, to read, watch movies, smile, laugh. I want to make love. I want to feel normal. I’m so tired of all this. I don’t want this disease. I don’t want to lose my body and die. I have never hurt anybody. I deserve to be happy. I don’t know why this is happening.

Scass
13-09-19, 20:18
So do it, do all those things you want to do. The ONLY thing stopping you is YOU! Your fear.
You are a grown man who admits to laying on the sofa for days doing nothing but googling stuff. The reason you canít find anything is because thereís nothing to find.

Start tomorrow, do something positive. Wake up and count your blessings, think of something positive instead of negative. Counteract those negative feelings with positive ones. Get fresh air, talk to friends, look after your girlfriend.
Try a different approach. Donít wait for bad things, try to do things that make you happy. Stop wallowing in your own fear and self pity.

Seymour
13-09-19, 20:36
I had a conversation with someone I know who has ALS. And apart from telling me his disease started with tripping on stairs, not being able to hold his fingers together when keeping his hands flat and experiencing progressive foot drop, he also told me that he never felt shaky, sore, dizzy, weak or numb. He said he feels 100% the same it’s just that the muscles don’t work. At his first neuro appointment he couldn’t stand on his heels and was surprised as he never felt any weakness.

But he also gave me life advice. He said he’s had it for 9 years and he can still move a bit and attributes this to a positive attitude. He doesn’t think my symptoms sound like ALS but he told me that whether or not I have it I should find a way to mellow out ASAP as I’m slowly killing myself already.

And after that conversation I started strength testing.


Got up two times from a chair on one leg (both legs)
Stood on one leg for 30 seconds (both legs)
Did two series of 10 squats each
Ran around the house
Went down stairs backwards on tip toes (was shaking like crazy)
Ran up the stairs
Walked on toes and heels

I succeeded but my ankle hurts and my muscles twitch now.

This is the extent of my obsession.

BlueIris
13-09-19, 20:40
I cannot believe I'm responding again, but get a life.

I genuinely have no clue how you're able to indulge your anxiety like this. How do you keep a roof over your head?

Seymour
13-09-19, 20:46
I cannot believe I'm responding again, but get a life.

I genuinely have no clue how you're able to indulge your anxiety like this. How do you keep a roof over your head?

It hurts but you are right. I am keeping a roof over my head because I am on short term disability leave with insurance and I have savings. I used to be normal before all this started.

You are absolutely right I have no life. My legs feel so stiff and sore that I dread going outside. I don’t know how I will get back into normal life.

Seymour
13-09-19, 20:51
I have severe anxiety. Especially health.

And I honestly have the absolute best girlfriend who told me she would stand by me no matter what happens if I only do some efforts to get a grip on my mental health. She misses the man she fell in love with.

I keep picturing myself crippled and getting pushed around by her in a chair and she never signed up for this.

Seymour
13-09-19, 20:57
So do it, do all those things you want to do. The ONLY thing stopping you is YOU! Your fear.
You are a grown man who admits to laying on the sofa for days doing nothing but googling stuff. The reason you can’t find anything is because there’s nothing to find.

Start tomorrow, do something positive. Wake up and count your blessings, think of something positive instead of negative. Counteract those negative feelings with positive ones. Get fresh air, talk to friends, look after your girlfriend.
Try a different approach. Don’t wait for bad things, try to do things that make you happy. Stop wallowing in your own fear and self pity.

This is good advice thank you.

You say there is nothing to find that’s why I don’t find anything but I would love for someone to say hey I was exactly like you and didn’t have anything in the end.

Scass
13-09-19, 21:50
Well Seymour even if someone said that youíd probably still say ďyeah but....Ē.

I havenít found anyone with the exact same anxiety symptoms as me. So why should you be so special?

Sheik N Shimmy
13-09-19, 22:43
This is good advice thank you.

You say there is nothing to find that’s why I don’t find anything but I would love for someone to say hey I was exactly like you and didn’t have anything in the end.

I joined this website back in 2005 when I was 37 years old and convinced that I was dying of various diseases which I had diagnosed myself with after googling the many symptoms anxiety was causing.

My GP sent me for tests (xray, blood/ thyroid tests etc). He told me that there was nothing wrong with me but I refused to believe him and called into him several times over a short space of time. He eventually got angry with me because he said I was making myself sick by my thought processes (psychosomatic symptoms). I refused to believe him and sought reassurances from various health professionals who all said that there was nothing wrong except for GERD (anxiety related!). Contributors here on NMP calmed me down and highlighted how delusional my thinking was. Eventually I stopped worrying but never spoke to a mental health professional (Psychologist- CBT, Psychiatrist etc).

I'm so embarrassed about this period of my life and regret the time I spent worrying about nothing. I wish I could speak to my younger self and say everything's going to be just fine.

Anxiety got the better of me in 2009 and again in 2013 when I was under extreme stress about something else. I attempted suicide as a way to escape from the stress I was under but only managed to break a couple of ribs. I immediately regretted it. After this I ended up in a fantastic mental hospital for a couple of months. I was diagnosed with depression with psychosis. I've been on Mirtazapine (45mg) and Olanzapine (12.5mg) ever since. I did CBT for a year. This has kept me on the straight and narrow and life is good with so much to look forward to.

Take my advice - get seen to by a mental health professional and accept medication, CBT or whatever it takes to get better. You owe it to yourself and your loved ones. There's no need to suffer.

MyNameIsTerry
14-09-19, 02:13
Not saying nobody knows better but I have searched the archives for days trying to find someone with both fasciculations AND pain/weakness and have found zero. I canít find anything reassuring or resembling my case.

Then I would say the search isn't working for you for whatever reason because I've been here years and seen many such threads about ALS where this is all talked about. I'm sure many other members on here would agree with me here because so many of them will have seen or posted in them. ALS threads are always about twitches and perceived weaknesses. Right now Darkside is saying it on his minus the twitches.

Twitches are common in anxiety. There are tons of threads discussing this. Twitches are worst when anxiety us high as many of us have discussed on some of these threads and as anxiety decreases, they do too.

I suspect the magnesium threads will also talk about twitching and low magnesium is potentially a problem for many of us but the medical world haven't got behind it yet. Magnesium is leached from the bones by stress and various medications.

Any threads about muscular tension will talk about pain, weakness, stiffness, lack of mobility, etc. I've been dealing with it as a side effect of a med for years, never had it before. Hold your mobile phone in an awkward position and your hand may shake. It may do that with anyone though.

I also said this to you the other day...



Yep, and they obviously don't just point to ALS as years on I'm fine.

The symptoms you mention also point to general weaknesses. If I hit the weights hard I could bring all of those on with DOMS. You've only got to watch the London marathon to see the wobbly legs on some at the end. And anxiety takes a massive told on the body as well as leaches various minerals out which can mean lots of symptoms including the ones you mention, which I've seen many on here mention in my time here.

With my anxiety I have found myself knackered just walking up the stairs. I spent a couple of months doing nothing in the house unable to go out ro do much of anything. When I got back out I felt unable to do much walking and felt very weak. It's like when someone has an injury they have to do the physio because the strength very quickly goes.

Consider someone who breaks their arm. Why do they have physio? The muscles atrophy quickly but muscle that has been built before rebounds quickly compared to building completely fresh muscle. Some may never regain all their mobility depending on their age, health, seriousness of injury, etc.

If you were bedridden for weeks to months you can expect to be weak. The body needs movement, it needs stress on it.

AJG
14-09-19, 11:37
These are some very good points. Look at situations when your in the hospital. They will kick you out of bed and encourage walking as quickly as possible because your muscles do get weaker. I remember after my spinal surgery, they told me to walk 4 days later. I was like no problem, I felt strong and confident like get me out of this bed. I almost fell out of bed because your legs kind of forget when your in bed this long.

Seymour
14-09-19, 14:59
I see the points and thank you Terry for your post.

What I find strange is that my legs feel worse when lying down as far as burning and twitching goes. I can’t walk much as I feel wobbly but if I walk a bit and do some squats and stuff the legs hurt and burn a bit less.

But then I’m always back to square one the next day.

And Terry, if I’m shaking going down stairs wouldn’t that be clinical weakness and not perceived?

Hijikata
14-09-19, 22:51
Jesus Christ you are a lost cause. Clinical weakness means you wouldn’t be able to walk down the stairs. Get some help man. If I was your missus and this is how you behaved because you refused to seek professional help I would leave you too. Your being ridiculous. If you’re not here to accept your health anxiety then you probably shouldn’t be here

Seymour
14-09-19, 23:33
Why do you keep bringing up my girlfriend? I try at home to not bring up my anxieties anymore and to be pleasant. I come here to vent and let the anxiety out. I am taking steps for her and seeing a therapist again this week and have upped my Zoloft dosage. You’re acting like I have personally offended you.

Fishmanpa
14-09-19, 23:36
You’re acting like I have personally offended you.

It is offending when you keep trying to tell us the sky is green.

Positive thoughts

Hijikata
15-09-19, 00:25
You are offending me because this is a place for people to come and talk through their anxieties and get help for health anxiety. For 25 pages myself and others have tried to do that with you and instead you keep arguing, acting as if you and your symptoms are different to the literally 100 other threads for ALS. FMP has linked the actual ALS sticky countless times which you have ignored, you have been selfish enough to go to ALS forums and actually talk to people who are really suffering, all because you have twitches (which a lot of is have the exact same as you) and perceived weakness (which again a lot of people with the same fear have). Not one person who has come here with this fear has had ALS. It is an incredibly rare disease. It is not subtle. It will stop you from doing things you used to be able to do. You seem to think that your google searching is somehow the equivalent of a neurologists training? I went to three different neurologists at the height of my fear and they all basically laughed at me once they saw I could do all the strength tests. If you are ready to accept your health anxiety then this is the place for you. But if you are convinced you have ALS then it isn’t. We are not neurologists. We don’t have ALS. Seeing as how for a week now you have ignored everything that has been said to you, this place obviously isn’t helping you so why are you here?